What is an MS nurse?
MS nurses are qualified nurses with specialist training in MS, and there are about 200 MS nurses in the UK. For many people, they become the first point of contact for any concerns about your MS. They can provide you with information, support and advice, as well as acting as a link between hospital, community services and social services. Ideally you will be referred to an MS nurse as soon as you are diagnosed, but you can ask your GP or neurologist to be referred at any point.
Can I get a second opinion?
You are entitled to a second opinion at any stage. You can ask your GP to refer you to another specialist. If you want to change GPs, you can ask to see someone else at your surgery or register at another practice. You do not have to give a reason for wanting to change your GP, but the new practice does have the right to refuse you if you live outside their area or if they do not have any spaces left on their list.
How should I prepare for an appointment?
Appointments with health professionals can be daunting, and there are all manner of issues that can complicate the process. This often stems from the fact that the health professional is meant to be an expert in their field, which can make people feel nervous about speaking up about their symptoms and what they think might be going on. Ideally, a meeting between a health professional and a patient should be a meeting of equals, with both parties working towards the same aim. This may not always be the case in practice, and sometimes people may feel that their doctor is not listening to them or taking them seriously. This can be complicated further if you believe you are experiencing neurological symptoms, which can often be hard to explain, or can mimic stress or depression-related symptoms. Some people feel that the health professional believes they are making up their symptoms, which can be very frustrating. Most people want health professionals to be patient, understanding and good at listening, and this may often be the case - but not always.
Unfortunately there is no right or wrong answer in terms of how best to approach an appointment, only points that you might want to consider. Being well-prepared, often by making a list of things you want to cover, and being as clear as you can, is usually a good idea. Medical terminology can also be daunting, so don't be afraid to ask for things to be repeated if they are unclear or ask for any terms you do not understand to be explained. Some people find it useful to take another person with them to the appointment who can act as a second set of ears, take notes and prompt you to ask any questions you may have forgotten. The person can act as a source of support for you, though it is worth bearing in mind that the dynamic between you and your doctor can change with another person in the room.
Some people are worried about mentioning what they think could be wrong with their health, in case the professional sees this as a role reversal, with the patient taking over their own role - that of working out what is wrong with the patient. The internet has made it much easier to research health conditions, and your doctor should not be surprised that you may have looked into what you feel is wrong. Nor should they take offence at you doing some research or making suggestions about what you feel is wrong - it is your body, after all. The patient-health professional relationship should be a collaborative one.
However, like any relationship, a patient-health professional one can involve a personality clash, or, in a less drastic sense, you may get on with one professional better than another. See the section below on seeking a second opinion, if you feel this may be useful for you.
At the appointment
"Questions to ask" – previously named "Power questions" - has been developed by the Department of Health to help everyone get the best out of their appointment.
We know that shared decision making between patients and professionals can make a lasting and significant different to healthcare outcomes. Receiving and understanding the right information during an appointment is key to involving people in decisions about their treatment and care. “Questions to ask" supports this involvement by helping people with general questions during a consultation, such as "Are there any side effects or risks?" and "How will I know if the treatment is working?"
The questions and tips in "Questions to ask" were developed through an extensive consultation which gathered the views of more than 200 patients and professionals. They were asked about the content, style and format, and their views shaped the final version of "Questions to ask". The outreach consultation also sought the views of people who face the biggest challenges in accessing and understanding consultations, including people for whom English is a second language, residents of care homes and the homeless.
"Questions to ask" is now available in a number of formats, posters, easy read, large print, audio, braille and a two-sided A5 leaflet, with GP surgeries and pharmacies receiving copies of the leaflets and posters by the end of October 2007. Translations of the leaflet are available in Arabic, Bengali, French, Gujarati, Somali, Portuguese, Polish, Punjabi, Spanish and Urdu. Download "Questions to ask" here.
The Multiple Sclerosis Society of Great Britain and Northern Ireland is a charity registered in England and Wales (207495) and Scotland (SCO16433)
