The Irish Chronic Pain Association welcomes this opportunity to brief the Joint Committee on Health and Children on the needs of people with chronic pain. With me today are Gina Plunkett, vice chairman of the association, Michael Bohill from County Waterford, Tony Chambers from County Mayo and Eugene McGinn from County Monaghan. Between them, my colleagues have been in constant pain for the past 42 years.
In this brief presentation we will define chronic pain and cover the extent of the chronic pain problem, the State's lack of response to it, the range of services available and the role of the Irish Chronic Pain Association and provide an overview of the association's work. We will also discuss how to address the problem of chronic pain in Ireland.
What is chronic pain? There are two terms used to describe pain, namely, “acute” and “chronic”. Both terms refer to the duration of pain rather than its severity and both can be equally severe.
Acute pain is short term and a normal biological response to injury. It is a symptom rather than a disease. Chronic pain, on the other hand, is a long-term, complex condition, which is debilitating and disabling. It is a disease rather than a symptom. It is important to emphasise that there is no known cure for chronic pain.
Chronic pain requires a multidisciplinary approach to treatment and management, and support is an important part of this approach. As we shall see, it is linked with severe psychological, social and economic consequences which impact upon sufferers, their families and health care resources.
Chronic pain is an inclusive term for many conditions, for example, neuropathic pain, fibromyalgia, migraine, arthritis and post-stroke pain. The most common type of chronic pain we encounter is neuropathic pain, which is caused by nerve damage.
Chronic pain is one of the most common reasons people seek medical help and, depending on the severity of their pain, they are thought to use health services up to five times more often than the rest of the population. Chronic pain is the most common reason people visit their general practitioner.
A recent Pain in Europe survey showed that chronic pain is a far more widespread problem than was originally recognised. The survey shows that 13% of the Irish population, approximately 400,000 people, have chronic pain; 70% of people with chronic pain regularly visit their GP but only 23% have seen a pain specialist; 15% of those with chronic pain eventually lose their job; and 19% were diagnosed with clinical depression as a result of their pain. It is important to emphasise that the individuals in question suffered depression as a result of their pain, rather than vice versa. In addition, 21% of those suffering from chronic pain reported that the pain symptoms were so bad they often wanted to die.
The Irish Chronic Pain Association sent out a questionnaire to 300 people with chronic pain. Its results supported many of the findings of the Pain in Europe survey. It also provided additional information on the lack of pain services currently available in Ireland. Preliminary data from the questionnaire replies show that a firm diagnosis of chronic pain took between three months and 24 years to achieve. As regards the distance travelled to secure professional assistance, some respondents travelled up to 200 km to consult a pain specialist and up to 300 km to attend a pain management programme. The survey also found that 77% of respondents initially reported pain to their GP.
The ICPA survey also covered the effect of chronic pain on people's lives and their families. Comments made by the respondents on the effect of chronic pain on their lives included that they had a very poor quality of life, felt isolated, were unable to carry out basic activities, had difficulty sleeping, suffered depression and were unable to work. Comments made by respondents on the effect of chronic pain on their families included that they were unable to support their family, care for their children, join in family activities or go on family holidays.
A recently published paper has shown that in Ireland, chronic pain results in significant financial costs to the State. Losses occur in the areas of health care, insurance and disability payments. On average, those with chronic pain are out of work for 17 days per year and 15% of people with chronic pain cannot continue in their jobs. In the case of lower back pain, procedures cost the State €28 million in 2002 and in the same year the total cost of claims for personal injury to IBEC was €2 billion, some €440 million of which was due to lower back pain. Chronic lower back pain accounted for 27%, or €348 million, of the total claimed. On a European scale it has been estimated that chronic pain accounts for the loss of nearly 500 million working days every year and costs the European economy an estimated €34 billion in lost earnings.
Incredibly, despite these annual losses, the State does not have an integrated national pain policy and, as a result, has no pain strategy. We believe progress can only be made in helping people with chronic pain if a clear policy is formulated and a national pain strategy is developed as soon as possible. Such a strategy is required to increase education in pain management across all health care disciplines, to increase treatment facilities to international standards, to encourage research and to decrease the overall cost to the State, both in human and financial terms.
The first port of call for someone in pain is the GP. Following appropriate investigations a GP should refer the person with pain to a pain specialist in a pain clinic. There are 28 pain clinics in Ireland at present and these are run by anaesthetists. Pain medicine is a sub-specialty of anaesthetics and has emerged over the past 20 years, as a result of the role of anaesthetists in the relief of post-operative pain. At its most basic, the person with chronic pain is seen and treated by a hospital-based pain specialist or one of his or her team. In the case of multidisciplinary pain clinics, additional support is available in the form of physiotherapy and psychological services. Such an approach is still in its infancy in Ireland and it is worth noting that, currently, there is no multidisciplinary pain clinic in Ireland that meets the International Association for the Study of Pain, IASP, guidelines.
Currently the average waiting time for a patient to be assessed for entry to a pain management clinic is greater than the acceptable waiting time of 12 weeks, as defined in the Government's health strategy document. Chronic pain often takes a long and variable time period to be diagnosed and many suffering from chronic pain will not have been referred to a pain specialist in the three-year timeframe allowed for reporting the injury to the Personal Injuries Assessment Board.
Chronic pain has a bio-psycho-social effect on the person in pain and it cannot be treated from a single perspective; it needs a multidisciplinary approach. Not alone are there medical issues to deal with, but problems arise in the areas of family and personal relationships, employment, finance, and social life. Understandably, such problems lead to feelings of isolation, helplessness, depression, guilt and self doubt.
Chronic pain is a very real condition and can destroy people's lives. Our organisation is working to support people with pain, while at the same time striving to increase awareness of chronic pain among health care professionals and the general public. We encourage people with chronic pain to be proactive in the treatment and management of their pain. It has been our experience that engaging in active self-management of chronic pain can improve one's quality of life.
It should be realised that self-management support groups such as the ICPA can greatly complement statutory services by offering support between appointments and by offering long-term follow-up support. We would argue that the voluntary work of associations such as the ICPA saves the State significant resources both in direct current medical costs and future costs. Our programmes strive to ensure that the person suffering from chronic pain is provided with timely support and in this way physical or psychological complications are avoided or greatly reduced in their severity. It should be noted that no State support is currently available to the ICPA in this work.
Another important role played by the ICPA is the support if offers to families. It has been our experience that family members and carers need to understand chronic pain and the needs of the person with chronic pain in order to enable them to support and encourage the person concerned. We have also found it vitally important that the families are made to feel part of the process and are not left looking on helplessly from the outside.
We are the principal support group in Ireland for the 400,000 people of all ages suffering with chronic pain. We deal with non-cancer pain. The ICPA is a registered charity, run by a committee of volunteers and is in existence for the past 14 years. Mary McAleese, President of Ireland, is sole patron of the association. We are a member of the Neurological Alliance of Ireland and of the Medical Research Charities Group.
Regular support meetings are held in Dublin. These meetings give people with chronic pain an opportunity to come together and share experiences and help dispel some of the isolation associated with chronic pain. A range of health professionals, medical doctors and alternative medicine practitioners are invited as guest speakers to give educational talks. A wide variety of topics are covered at the meetings, as chronic pain is a complex condition. We produce a quarterly newsletter which is sent out to members.
A support telephone line, which was launched in 2004 by the Minister for Health and Children, Deputy Harney, is manned by volunteers and operated from the ICPA office, providing valuable support to people throughout Ireland suffering with pain. People with pain find it very difficult to travel and therefore are often unable to attend the support meetings and workshops. It has been our experience that the support telephone line and newsletter provide a vital tool in coping with chronic pain.
Our website was launched in 2002 by the then Minister of State at the Department of Health and Children, Deputy Callely. It contains news on chronic pain and the work of the association. There is also a discussion forum where members can talk to one another about chronic pain and other relevant issues.
During 2004, the ICPA, working in conjunction with Pain Association Scotland, launched a pilot series of self-help workshops entitled, Living with Pain, A Self-Management Approach to Chronic Pain. The initial workshops were very successful and the programme was extended to the regions in 2005. We received a grant from the Ireland Fund which enabled us to run 11 workshops. The workshops focus on understanding the personal experience of chronic pain from a bio-psycho-social perspective and identifying self-management strategies that can help individuals to regain some control and thereby cope more effectively with their condition. While there is a waiting list for further workshops, it will not be possible to run any more workshops for the foreseeable future, due to lack of funding. Some of the topics covered in the workshops include, the pain-stress cycle, sleep-relaxation, negative thinking and manageable goal-setting ideas.
Government funding is urgently required to ensure the continuity and expansion of the services provided by the ICPA. We are in the process of compiling a new three-year business plan, as the previous plan expired in 2006. Our action programme includes having chronic pain accepted as a disease in its own right, to increase awareness of chronic pain and to expand the pain awareness campaign for health care professionals, the public and the media. In addition, we wish to extend the current part-time support telephone line to a full time one, to provide regular self-help workshops in the regions, to employ a paid co-ordinator for the office and to develop countrywide branches.
In addition to offering support and information to people in pain, we are running a pain awareness campaign. The current phase of the campaign is aimed at health care professionals in the community, in order to increase their awareness of the extent of chronic pain and the difficulties faced by people with the condition. Professor Niall O'Higgins, past president of the Royal College of Surgeons in Ireland and professor of surgery in University College Dublin, launched the Irish Chronic Pain Association information brochure for health care professionals on 17 October in the Royal College of Surgeons.
The European Pain Network, EPN, is a network of national pain support groups from 12 European countries. The ICPA was one of the founding members of the EPN. Ireland currently holds the vice-presidency of the European Pain Network.
The health care system encourages the person with pain to remain passive in the treatment and management of his or her pain. This system needs to change if it is to deal effectively with the large number of people presenting with chronic conditions. We encourage people with chronic pain to be proactive in the treatment and management of their pain and fully endorse the International Alliance of Patient Organisations, IAPO, declaration on patient-centred health care.
Only a small percentage of the health care budget is spent on primary care. When a patient goes to the secondary care system the health care costs spiral and demand outstrips supply. Primary care practitioners are not always made aware of the outcome of hospital investigations and this can lead to a breakdown in the continuity of care from secondary to primary level. A streamlined interface between hospital-based and community-based care should be developed. A clearly outlined plan of management, including a plan for dealing with flare-ups, is required. Ideally, clinical nurse specialists could manage this interface. GPs, pharmacists, physiotherapists and community nurses, to name but a few, would then be in a position to appropriately manage the care of someone with chronic pain, thus avoiding the need for the involvement of the overcrowded accident and emergency departments in hospitals.
Support groups, working alongside clinicians in a patient-centred health care environment, offer the best possible outcome for people in pain. Health care systems throughout Europe have evolved into their present state over many years through the treatment of acute conditions and are not, in many cases, appropriate to the treatment of chronic conditions. It is vital that the major stakeholders, that is, the clinicians, support groups and policy makers, work together for the benefit of people with pain and together instigate the necessary changes to bring about a patient-centred health care system.
In addressing the chronic pain problem in Ireland and education for health care professionals, health care professionals should be prepared to meet patients' desire for information on pain and its management. A lack of knowledge on the part of health care professionals is one reason for the inappropriate treatment of chronic pain. Education should reflect that chronic pain is a multidimensional phenomenon that cuts across professional boundaries. We need an effective system of referral to pain specialists and pain clinics, and timely access is essential to optimise care, treatment and quality of life.
The efficient co-ordination of existing services to ensure equitable access to these services is desirable, as is the introduction of best practice models to optimise the treatment of chronic pain. The Department of Health and Children must view health expenditure as an investment. We urge the committee to produce a report for the Government on the needs of people with chronic pain.
