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Oxford University Hospitals NHS Foundation Trust

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Welcome to Oxford MND Care and Research Clinic

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.

The clinic has over 400 patient visits per year (over 120 of which are new referrals), and we see people from all over the UK as well as the Oxford area. The clinic is sometimes referred more 'general neurology' cases, and patients with other neurodegenerative disorders, as well as those with suspected MND (also called ALS).

Not everyone who is referred to this clinic has MND.

Sometimes the diagnosis of MND 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.

What happens at the first visit?

You may wonder who you might meet on the day, and what is likely to happen to you. The clinic is run by two Consultant Neurologists: Professor Kevin Talbot and Professor Martin Turner, both with over 10 years' experience specialising in MND.

The Clinic Coordinator is Rachael Marsden, who is also a Specialist Nurse. As we are a teaching hospital we sometimes 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.

Who will see me initially?

You will usually see a Consultant first. Professor Talbot and Professor Turner alternate seeing new referrals each week.

What will the doctor want to know?

The initial consultation can take anything from 30-60 minutes. 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, and this can involve briefly removing your clothes down to your underwear, so that we can properly assess your muscles.

Who else might I see?

At the first visit you are likely to meet the Clinic Coordinator Rachael Marsden. She may measure your weight, and the strength of your breathing muscles (see FVC). She may also run through some questions about what help you need to carry out your daily routine (see ALSFRS-R).

At subsequent visits, we also have:

  • Senior Occupational Therapist (Jenny Rolfe)
  • Physiotherapist (Liz Bellido)
  • Dietitian (Julie Dehavillande)
  • Specialist Speech and Language Therapist (Clare McMahon)
  • Neuropsychologist (Dr Ian Baker)

available to the clinic, and we request their opinion if your symptoms warrant this. They will then make contact with your local services to ensure that any plans we make are followed through.

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 second visit soon after the first one to go through questions that often arise after you leave.

Although you will always get a copy of the letter that goes to the GP after the appointment, some people find it helpful to record the consultation on their mobile phone. Please tell one of the team if you would like to do this.

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.

Do I need to come back a second time?

Your decision whether to attend the clinic a second time or regularly (usually every 3-6 months) will depend upon your diagnosis, and on factors such as the distance involved. We think a follow up appointment can be useful to review any uncertainty about the diagnosis, to discuss the management of any progressive symptoms, and to provide emotional support and information about current research. We believe that long-term support is best provided locally to the patient and our Clinic Coordinator Rachael Marsden 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, and sometimes by personal telephone call in addition.

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.

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