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About the Motor Neurone Disorders Clinic

This page provides some information if this is your first visit to us

 

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 1200 patient visits per year (over 120 of which are new referrals), and we see people from all over the UK as well as the South Yorkshire region. The clinic is sometimes referred more 'general neurology' cases, and patients with other neurodegenerative disorders, as well as those with suspected MND.

Not everyone referred to this clinic has MND and there is more information on other neuromuscular conditions here

 

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 Pamela Shaw and Dr Christopher McDermott, both with over 15 years' experience specialising in MND. The Clinic Coordinator is Theresa Walsh, 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 Shaw and Dr McDermott see 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 MND Specialist Nurse Theresa Walsh. She may measure your weight, and the strength of your breathing muscles. She may also run through some questions about what help you need to carry out your daily routine.

At subsequent visits, we also have a Physiotherapist (Gill Squire) and Dietitian (Rowan Sutherill) 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.

As we are a research centre there are also members of the research team who may be introduced to you at this time.

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.

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 2-6 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 Specialist MND Nurse Theresa Walsh 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.

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 Sheffield Teaching Hospitals NHS Foundation Trust. 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).

 

What we can offer you in clinic?

1. A regular review by a neurologist with expertise in MND

2. A team which works together to provide an assessment of each individual

3. Advice information and support

4. A proactive service which anticipates future needs

5. The opportunity to see more than one therapist at clinic

6. Time for you and your family to ask questions about your illness

7. Time to discuss your fears and worries

8. The opportunity to be involved in new research projects

 

If you are admitted to hospital please ask a relative or a nurse on the ward to inform the MND care Co-ordinator at Sheffield Teaching hospitals trust on Tel: 0114 222 2266 so that we can offer them support and advice about MND as required.

An answer phone is available out of office hours. For urgent advice please contact MND connect or your own GP.

The Sheffield MND Care and Research Centre is an MNDA Care Centre and is grateful for the funding it receives from the MNDA to support this.

Meet the MND care team

Find out more about our team members


Sheffield MND Research

Find out more about MND research in Sheffield
 


 

 

 

 

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Examination room

 

 

Testing a patient's reflexes

 

 

 

 

Monitoring blood pressure during a clinic visits

 

 

 

Completing a questionnaire

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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