Getting the most out of your visit

• Ask for an explanation of any words that you don’t understand –
including illnesses, medicines, symptoms or treatments.
• Ask what results you can expect from any drugs, therapies or medications given to you. Should you expect only a little or a more significant change in your condition? When should these changes occur?
• Ask about any other options that you might have and their advantages or disadvantages.
• Ask about side effects that you might have from any drugs or therapies prescribed for you.
• Ask about any follow-up procedures. When and on what basis will you be seen next time?
• Before a visit to your doctor, write anything down that you need to ask, noting important points that you don’t want to forget to discuss.
• Note down important points arising from your discussions with your doctor as soon as possible. Increasingly, some doctors are
now happy to allow you to tape record your discussions to jog your memory of what he or she said. Research has shown that having such a recording is a great help to yourself, and your family, in following a doctor’s observations or advice.
• Keep a diary of important events or issues between visits to the doctor, so that you can discuss these at your next visit.

Seeing your GP notes

Under recent legislation all patients have the right to see their complete medical notes, and to request corrections to, or deletions of, any inaccurate material – particularly regarding comments on a patient’s attitude or state of mind. The doctor is fully entitled to either sit with you whilst you examine the notes or recover reasonable costs of providing copies (including administration costs). However, you can be refused access to notes when there is a reasonable concern that the contents may have an adverse effect on your welfare. Most doctors are very willing to comply graciously with such a request.

Having a check-up

The purpose of the traditional neurological check-up, for which people with Multiple Sclerosis are asked to return every 6 months or year, is gradually changing. Previously, because there was no real therapy to slow down the course of the disease, the check-up was used to monitor the speed of its progression, and to offer symptomatic and appropriate advice. Many people found this a frustrating system, for often their symptoms were as well controlled as they were likely to be, given the modest resources available, and the consultations following a routine examination frequently appeared cursory, focusing on further decline (or any newly acquired neurological problems) since the last check-up.
However, this approach is changing, as neurologists now turn their attention far more towards assisting people to manage MS medically over the longer term, rather than largely focusing on getting the diagnosis right and seeking confirmation of that through monitoring the disease.
Neurologists now focus far more on what is described as the ‘rehabilitative’ approach to MS, the battery of newer drugs that might affect the course of MS, and the increasing recognition of the contribution of other professions to your care. All this is changing the
‘check-up’ process, making it more likely to be of value to you. Often you will be seen by other specialists – perhaps specially trained nurses – as well as the neurologist; thus the increasing use of MS clinics of the drop- in variety is beginning to make the problematic ‘check-up’ experience of old a matter of the past. However, there are still areas of the country where the old system prevails, and in this case it is very important that you ensure that your questions and concerns are addressed in the consultation with your neurologist – after all it is a two-way discussion.
It is important anyway that some periodic monitoring of your Multiple Sclerosis is undertaken, to give you further information about likely developments in the disease, and to assess your eligibility for newer drugs, or possibly trials of experimental drugs, that is if you wish to participate. In this case a neurological examination will determine, over the course of time, how many episodes of MS have occurred, how many individual areas of the nervous system have been affected, and the rate at which new areas are being affected. You may also have an MRI scan, which records similar information about changes in plaques, plaque location and severity, but which may, from your point of view, be little related to your symptoms. Your clinical history is also vital when your neurologist is dealing with any new episode of MS that occurs.