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Painfull signals, but also
suggestions for improvement.
Collected and recorded by the staff and administrators of the foundation Pain-Hope and in April 2002 presented to the Ministry of Health and all other organizations concerned with the treatment and management of pain .
CHRONIC PAIN.. YOU SHOULD HAVE TO LIVE WITH IT!!
Despite increased research into the phenomenon of chronic pain .
Despite the realization of a fourth chronic pain information centre .
Despite increased financing for research into chronic pain .
Despite that chronic pain has been christened Chronic Benign Pain Syndrome
This has has not helped in any way patients who are confronted on a daily basis with chronic pain .Patients are still sent home with their pain , ‘ To learn to live with it ‘ without any further help being offered .Despite increasing possibilities for the treatment of pain , many patients with chronic pain still receive too little medication or treatments that do not fit the bill .
At the moment more than 800,000 people in the Netherlands suffer pain daily .A recent poll has shown that 70% of these people also suffer Psycho/Social and societal problems. 50% of those questioned suffered from somberness and depression . 15% went so far as to admitting to wanting to put ‘ an end to it all’. In the same poll it was shown that people who have no pain badly underestimate the gravity of the situation .The battle against this lack of understanding only adds to the often lonely daily struggle with chronic pain .
The foundation Pain-Hope was started in 1988 by people with chronic pain for people with chronic pain , and has become an important source of support and reliable information for people with pain .Healthcare workers also make use of Pain-Hope’s evident expertise .
At this time there are 40 volunteers working throughout the country , all are people with pain of some sort that for whatever reason continues .Foundation Pain-Hope regularly organizes meetings throughout the country for sufferers of chronic pain and other interested parties .In several hospitals drop-in surgeries are conducted by expert staff members , other staff members give lectures on pain and living with it to trainees in all branches of the health service .
Through these activities the foundation Pain-Hope has collated much information about the state of pain treatment and management in the Netherlands .
Using this information the foundation Pain-Hope presented a memorandum to then Secretary of State for Health , Simons , at the inauguration of the National Commission on Chronic Illness .Many of the problems and adjudged requirments mentioned in this memorandum are still revelant to this day .
For the members of the foundation Pain-Hope this is a reason to once again demand more attention for the ever increasing group of people who now more than ever need it !!! .
Suffering from chronic pain is still a greatly underestimated problem
Chronic pain itself is (still) not recognised as an independant form of harm .
This is a reason for the members of foundation Pain-Hope to ask for the consideration of the following .
Societal and Psycho/Social isolation .
People whose chronic pain has no discernable cause , not only must deal with this pain but also with a considerable lack of understanding . More often than not due to a feeling of impotence , a diagnosis of the ‘pain being between the ears ‘ is offered . This must never occur without further explanation and certainly not without thorough and essential investigation of ALL possible causes being carried out .
Good treatment of acute pain can prevent it becoming chronic .
Sadly , many doctors have neither the capacity nor the knowledge to treat patients with chronic pain , as a result they failto receive the correct treatment .
Longer waiting lists in the health service contribute to the increase of patients with chronic pain .
In medical circles a patient is considered to have chronic pain when he or she has pain for longer than six months which has no direct solution .These days , the time between presenting to the general practitioner with such a pain complaint , and its ultimate diagnosis is more often than not LONGER than six months !! .
Inadequate registration of treatment (im)possibilities .
For those requiring assistance and those giving it , it is still too difficult to find out what the possible treatment for the pain is , and more importantly , where it can be found .
A registry of WHAT is done WHERE and by WHOM in the fields of pain treatment and research into pain treatment , is still not available .
A register of this kind would also be helpful in the tracing of bogus practioners .
Information .
There is still no centralized registration of good and accurate advice and information .
There is not enough indication as to the risks and irreversability of some mehtods of treatment .
Outside of our four centres for pain information and the outpatient pain clinics in university hospitals , there exist pain teams or pain groups each working in their own way to combat pain .
The quality of these clinics , teams and groups is variable and often dependant on the skill and knowledge alone of those that run them .
There is as yet no standard regulation .
Alternative treatments .
Those working in the mainstream treatment of pain rarely if ever collaborate with those in the so called alternative circuit ,or are not advised of their different forms of treatment and often benificial results .
Fellow sufferers and learning to deal with pain .
Fellow sufferers can learn from each other .
Research has shown that patients who have contact with fellow sufferers have less chance of falling into a seemingly endless bout of ‘medical shopping’ , than those who do not have this contact .
Contact with fellow sufferers can save the patient energy, the health service money , and the carer a lot of time .
Living with pain .
It appears that patients with Chronic Benign Pain Syndrome (CBPS) who receive good and timely support in learning to live with pain are more than capable of living a good life despite the pain .
Sometimes a return , all be it with accomadations and adjustments , to the werkplace is also a possibility .
Scientific research .
Although recent years have seen much research in the area of pain , this has had little benefit for the patient .
Research results are not known to general practitioners and specialists, rehabilitation therapists and other carers , so that possibilities go unused .
Within pain itself , pain in the elderly is even more of a neglected area , causing many people in care and nursing homes to suffer increasing pain .
Fortunately pain in the young receives a lot more attention , but this could be put into practice better .
There is still too little use of what the patient finds important and the patients own experience .
Waiting lists .
Up till now attention to long waiting lists has concentrated on cardiac care , organ transplants , orthapaedics , opthalmology and other fields . The long waiting lists for help with chronic pain has had little publicity .
Waiting times for outpatient pain clinics and pain centres of six months to a year are not exceptional
The steadily ageing population will only make matters worse as infirmity in old age is more often than not painfull !! .
Add in the cost of all this and we do not need to remind you that every day with pain is a day too many !!
Medical discharge .
Due to chronic pain not being recognized as an independant source of harm , difficulties arise with fit/unfit declarations during medicals ,legality of benefit payments , receiving welfare facilities or returning to work .
Insurance and compensation .
Many people with CBPS benefit from alternative treatment methods . Manuel therapy ,physiotherapy ,caesar and menschendiek ,acupunctuur and other treatments often result in the maintainance of mobility . Sadly these treatments are not always (fully) covered by insurers . Restrictions on the number of physiotherapy sessions required by patients with CBPS is a cause of unnecessary loss of mobility for many .
Health insurance contracts restrict freedom to seek and visit doctors and carers indifferent regions of the country , and so called freedom of doctor choice is more often than not a paper tiger .
In an effort to achieve an improvement in the situations of more than 800,00 people who daily suffer pain , the directors and members of foundation Pain-Hope have the following suggestions .
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