 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
|
 |
 |
Patient Experience > General Issues
How do I find out what has been written about me and my medical condition ?
In some countries patients have easier access to their own personal medical information and records than in others. In the UK , some hospitals and a few GP practices display notices saying that patients can request a copy of letters written by their GP or consultant. However this is not widespread practice. The Patient's Association offers help on patient's rights and how to go about this. For further information see ( www.patients-association.org.uk) A Commonwealth Fund Survey showed wide differences amongst the English speaking countries in patient access to their medical record with patients in the USA and New Zealand more likely to have access to this information than patients in Canada or the UK.
How can I know what treatment is likely to help me ?
Experts look at the evidence from research studies and weigh it up carefully when deciding which treatments work and which don't work. This is called evidence-based medicine (EBM). However the evidence won't necessarily tell you which treatment is best for you. It may tell you what percentage of people are likely to be helped but it won't tell you whether you are one of that percentage: “The information that I want is not that 1 in 10 patients will benefit, but whether I am that one” Shelford G: Risk, statistics and the individual. BMJ 2003. It is important to weigh up the benefits and harms of treatment carefully.
Health professionals rarely have time to read the vast number of articles published in the journals in their field of medicine (Davidoff F Evidence based medicine. BMJ 1995). More medical information is now summarized but not all doctors use this type of information which can lead to wide variations in how conditions are treated across a country. (Chassin M The urgent need to improve health care quality JAMA 1998). It can take a long time to develop guidance and a great deal of research can be published in the meantime which may not be included in the final published guidance. Guidance is generally reviewed every few years which means there may be a long gap before it is updated.
A great deal can be learnt from another person's experience of treatment and what other people with your condition say is important, but they are not you. Decisions about treatment should not be based on this alone: For further information about evidence based-medicine see (http://www.besttreatments.co.uk/btuk/howtouse/134.html)
There is little evidence based medicine in the field of pelvic pain, however there is a considerable amount of basic research. It is becoming more common for patients to find out more about their condition by becoming familiar with what has been written about them by their doctors, looking at the published studies and talking to others in a similar situation or with a similar condition to themselves.
How do I access help with managing pelvic pain ?
Knowledge and expertise in managing pain varies enormously between countries and between clinicians. In many European countries, a GP referral to consult a specialist is not required in gynaecology and pain management. In these countries patients have access to a consultant of their choice. In some countries, patients have great difficulty in accessing such services and expertise. Research in the UK indicates that patients seen in secondary care for long term pelvic pain are just the tip of the iceberg( Zondervan BJOG 1999). In the UK, undergraduates in medical training generally receive less than four hours training in managing pain. How can pain which is so important to the patient experience be such a low priority ?
In many countries ultrasound examinations are carried out by the treating consultant, whereas in others, the consultant is dependent on the expertise of the radiologist who may not be experienced in pelvic pathology. MRI imaging expertise has advanced considerably and greater use is made of such expertise in some European countries than in others. This may have implications for diagnostic services and the way they are organized.
In 2006 an internet patient survey was carried out in France, the USA and the UK on access to services and quality of life for those with chronic pelvic pain. The survey indicated that patients have access to a very limited range of treatments and that many treatments are of little benefit. However patients in countries that had access to treatment in interdisciplinary teams found this beneficial. Patients who had access to specialized physiotherapy felt that this was helpful. However patients report that physiotherapy is much harder to access in some countries than in others. Countries which have easier access to physiotherapists with experience in pelvic pain include the USA, France and Germany. European citizens can seek care in another Member State in certain circumstances. The European court's rulings have developed the following principles:
- Any non-hospital care to which a person is entitled in their own Member State, they may also seek in any other Member state without prior authorization, and be reimbursed up to the level of up to the level of reimbursement provided by their own system.
- Any hospital care to which they are entitled in their own Member State they may also seek in any other Member State provided they first have the authorization of their own system. This authorization must be given if their system cannot provide them care within a medically acceptable time limit considering their condition. They will be reimbursed up to at least the level of reimbursement provided by their own system.
How do I express my opinion about about local services ?
A forum entitled "Patient Opinion " has been established by a GP for patients to express their views anonymously about hospital services.You can also read what has been posted by patients in any postcode area and in any field of medicine or care.
