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
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
referred to this clinic has MND and there is more
information on other neuromuscular conditions
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.
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
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
Who will see
You will usually see a Consultant first. Professor
Shaw and Dr
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
Who else might
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
As we are a research centre there are also members
of the research team who may be introduced to you at
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
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.
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