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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 500 patient visits per year (more than a quarter of whom 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).

What's the difference between MND and 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.

Your first visit

You may wonder who you might meet on the day, and what is likely to happen to you.

The clinic team has two Consultant Neurologists, Martin Turner and Alex Thompson, both with many years of experience specialising in MND.

The Clinic Coordinator is Rachael Marsden, who is also an MND Nurse Consultant. She is supported by MND Specialist Nurse Jess Newman and Senior Occupational Therapist Phillippa Sharpe.

We also have a Clinical Psychologist, Rachel Woolrich.

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.

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 you will see

You will usually see a Consultant first. The three consultants rotate seeing new referrals each week. All new referrals are discussed in detail by all three consultants together on a day after your appointment. In this way you are assured of the benefit of more than one view.

What we want to know

The initial consultation can take up to 45 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 you might see

At the first visit, after the neurologist you are likely to meet the Clinic Coordinator Rachael Marsden or one of the wider team.

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).

She will then make contact with your local services to ensure that any plans we make are followed through.

Getting a diagnosis

The consultant 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.

Repeat visits

Your decision whether to attend the clinic a second time or regularly (usually every three to six 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 team will 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.

Your 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.

Last reviewed:25 April 2024