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What to expect at your clinic appointment
If this is your first visit to the clinic we understand that it can be a worrying time, so remember we are here primarily to offer you support. We see people from all over theUK. The clinic also caters for patients who have conditions very similar to NMOSD, or if a clear diagnosis hasn’t yet been made.
NOT EVERYONE REFERRED TO THIS CLINIC HAS NMOSD
Sometimes the diagnosis of NMOSD will already be clear and other times you, your GP or your neurologist may be wanting another opinion about your symptoms. We recognise that you may have seen a lot of specialists before you reach us and that your symptoms may have been present for many months, or even years.
What happens at the first visit?
The clinic is separated into appointments with a team of different specialists and therapists. Everyone you meet has the aim of supporting you and providing a full assessment of all your needs.
You will firstly see the Consultant Neurologist(s), who are experts in your condition. They will gather a full history from you and use their combined expertise to confirm a diagnosis, suggest further investigations (as needed) and to discuss treatment options with you.
You will then go on to see the nurse specialist and other therapists. At the Oxford Centre, you may also visit the Oxford eye hospital.
If any further investigations/appointments are required (such as MRI), we aim to complete these on the same day as your appointment unless you state that you would like to come back on another day
As we are a teaching hospital we may have medical students or other healthcare professionals sitting in the clinic observing – please say if you would rather they were not present.
Should I bring someone with me?
It is a good idea to bring someone with you to the clinic, even if you would rather they remain in the waiting room during consultation.
What will the doctor want to know?
It is important that we go over all of your symptoms from the start, although we realise that you may have told the same story to several doctors. This ensures nothing has been overlooked. We are most interested in the symptoms you have experienced and their timing, rather than what other doctors may have explained to you or tests you may have had in the past. It is usual to perform a full neurological examination so that we can properly assess you.
Getting a diagnosis
The doctors in the clinic will try to provide you with a complete diagnosis and give you time to ask any questions you might have. It can be helpful to write down any questions you think of before the visit, or we may suggest a phone call with your NMOSD Specialist Nurse soon after your first appointment to go through questions that often arise after you leave.
There are some cases where further tests may be required to reach a diagnosis or to exclude other diagnoses. Sometimes we cannot be absolutely certain of the diagnosis and this can be one reason to attend the clinic again, so that we can assess whether there has been any change in your symptoms.
How long will the clinic appointment take?
You may meet all the members of the NMOSD team: the Consultant; NMOSD Fellow; Specialist Nurses, Therapists (occupational therapist, Orthoptist, Physiotherapist, Dietitian) and Psychologist. This can take around 2-3 hours.
Do I need to come back a second time?
The decision whether to attend the clinic a second time or regularly (usually every 6 months-1 year) will depend upon your condition, and on factors such as the distance involved. We think a follow up appointment can be useful to discuss the management of any relapses or symptoms, and to provide emotional support and information about current research. We believe that long-term support should also be provided locally to the patient and we can liaise with various local services to ensure this happens. The doctor who sees you will also ensure that your GP is aware of everything by letter.
Do I continue to see my local neurologist?
Although your local Neurologist may not always be able to see you for the same length of time at each consultation as we are able to, it is generally helpful to continue to see them even if you are coming regularly to our clinic. We work under a “shared care” system so that your local teams are aware of what the NMO team suggests and vice versa.
Your personal information
As with all NHS patients, your personal information is recorded in your medical records, which are confidential and held securely within the Walton Centre Foundation Trust. As we are also a research centre for NMOSD, you will be asked to participate in research, but this is never obligatory and you have every right to say no thanks. With your written permission we also record information about your symptoms on a secure database that can only be accessed by the clinic team using a password. This database allows us to study the different presentations of the cases we see, which we hope will lead to a greater understanding of the disease process. We would never publish this information in a way that could identify an individual. Please let someone know if you have any concerns about this, or if you wish to have your details removed, this would not affect your future care in any way, and you do not have to give a reason.