How to get help

A few tips

Abdominal/pelvic pain is the most common reason for people in the UK to contact NHS Direct.

If possible plan ahead and avoid seeking information at the last minute - ie just before an appointment or consultation. Similarly in non emergency situations health professionals should  allow patients time to look into and consider their options regarding treatment.

Be organized - keep GP/consultant medical letters, test results etc in a folder in date order where you know you can find it easily. Your GP practice may have an online (EMIS) facilty where you can access your medical records and add information of your own. See here for how to go about this.

Keep a diary of your pain symptoms, when it occurs, where it is, what type of pain it is, how severe it is, what relieves it.

Communicate effectively with health professionals. This can be especially challenging where pain is concerned for various reasons.  Pain that is present all of the time can be particularly difficult  to talk about because you live with it day in day out. Likewise it can be difficult to remember or to know what is relevant when pain is not present at the time you see a health professional. Resources and materials that can be useful during consultations can be found here

Be familiar with the content of the NHS Constitution about your rights. A printed version is available in several languages as well as interactive, large print  and audio versions on the Department of Health website.

If you are having surgery

The World Health Organization Safer Surgery campaign was launched in June 2008 to reduce the number of surgical errors such as "wrong patient, wrong site, wrong organ". A surgical checklist was developed and piloted in several countries. One UK hospital participated in the pilot. Over 92% of surgeons in the study said they would want the checklist used if they were having surgery. The checklist should be used in all NHS hospitals from February 2010. All NHS and private hospitals will have to submit an audit to prove compliance. If they do not they will receive a visit from the Care Quality Commission.

Dr P Hammond (GP) suggests that if you're having an operation, don't sign the consent form until you have written assurance that the checklist is being used or even better, download it and, take it in with you and stick it to your chest. The checklist can be downloaded from the NPSA (National Patient Safety Agency) website.

Before surgery ask who will be carrying out your surgery, what experience they have in carrying out the procedure that you will be having and their results.

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. You are entitled to ask for a copy of letters written. This is becoming more common but is still 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. Patients in Denmark, France and Belgium have a legal right to have copies of their medical records. Dealing with pain is a high priority  in these countries and patients have a legal right to have theirs managed.

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: Why do I need evidence based medicine?

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?

As part of the NHS Choices website, the government has set up a service where you can rate GPs and hospitals and view the feedback others have given them. It is only valid for services in England.

http://www.nhs.uk/servicedirectories/Pages/ServiceSearch.aspx

Click on the service you need - eg GPs - it then asks you to type in a postcode or town name. As an example London - it brings up a list of GP practices which you can browse. Once you have found the one you need, click on it to get information about the practice, eg St Katherine's Dock Practice. Down the right-hand of the page there are comments by patients.

If you want to see more detailed comments and reviews, on the right of the listings page click Detailed comparison. There will be five GP practices listed horizontally - scroll down to see various headings, such as 'how patients rate this practice overall' or 'what patients say about staff at this practice'. Click each heading to get the details. You can view comments, reviews, and the percentage of patients who were happy with their care and add your own comments.

 

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.

For information about access to services for Endometriosis, Pelvic Pain and Pain Management , contact:

info@pelvicpain.org.uk

An introduction to what is good evidence for healthcare?

http://www.cochrane.org/cochrane-reviews


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