Visiting the Clinic for the First Time
Not everyone referred to the clinic will have MND. Our team care for people with a wide range of neurological disorders. You can find information regarding other neuromuscular conditions here.
We understand this may be a troubling and upsetting time for you. Please remember that all our staff are here to offer you any care and support you may need.
Our MND clinical care nurses provide a telephone service offering emotional support, advice and information on 0114 226 5388. She will be happy to answer any questions or concerns you have ahead of your first appointment. Please see our Contact Us page for further details.
The page below contains information about the clinic, and what to expect during your first appointment.
The Motor Neuron Disorders Clinic is located on floor M1 of the Royal Hallamshire Hospital, Glossop Road, Sheffield.
When you arrive for your appointment, enter the hospital via the main entrance and take the patient lift directly to M floor.
Please speak to a member of Hospital staff if you require any assistance.
Please see our Find Us page for further details and travel advice.
The clinic is overseen by our team of Consultant Neurologists: Professor Pamela Shaw, Professor Christopher McDermott, Dr Tom Jenkins, Dr Channa Hewamadduma and Dr Esther Hobson, all of whom are experts in the diagnosis and management of MND.
The Clinic Coordinators are Tara Bradford and Jenny Booth, who are MND Clinical Care nurses.
You can find out more about all our team members here.
The clinic receives more than 1,200 patient visits per year, over 120 of which are new referrals. We care for patients from across the South Yorkshire region and from the whole of the UK.
Some patients referred to the clinic will have a clear diagnosis of MND, others may have been referred for a “second opinion” or for more specialist care. We recognise that you may have seen several specialists before you reach us, and that your symptoms may have been present for many months.
As well as patients with suspected or confirmed MND, the clinic will sometimes see patients with other neurodegenerative disorders, and more “general” neurology cases.
It is a good idea to bring someone with you to your appointment.
If you wish, they can stay with you during your consultation or remain in the waiting room.
The initial consultation will take between 30 and 60 minutes. The doctor will want to discuss each of your symptoms, their duration and timing, and some of your medical history. You may be asked to repeat information that you have already discussed with several doctors, but this will help to ensure that nothing has been overlooked.
The doctor will usually perform a full neurological examination. This can involve briefly removing your clothes down to your underwear so that we can accurately assess your muscles and movement.
As the Royal Hallamshire is a teaching hospital, there may occasionally be medical students or other healthcare professionals observing the clinic – you may ask them to leave your consultation at any time.
Our doctors will try to provide you with a complete diagnosis and give you time to ask any questions that you might have. It may be helpful to write down any questions you think of before your appointment. Your doctor may suggest a second consultation soon after the first one to discuss any questions or concerns that arise after you leave.
In some cases, further tests may be required before reaching a diagnosis, or to exclude other conditions.
Sometimes we cannot be certain of the diagnosis and your doctor may ask you attend the clinic again to assess if there have been any changes to your symptoms.
During your first appointment you are likely to meet one of the MND Clinical Care Nurses, Tara Bradford and Jenny Booth. They may measure your weight and test the strength of your breathing muscles. They may also run through some questions regarding any help and support you need to carry out your daily routine.
Depending on the nature of your symptoms, you may be introduced to other members of our multi-disciplinary team who will work with you and your doctor to ensure that your care is tailored to your individual needs.
The specialist will contact your GP or local services to ensure that any plans you discuss are followed through.
As we are a research centre conducting a wide portfolio of studies and clinal trials relating to MND, you may also be introduced to members of our research team.
You can learn more about our ongoing research here.
In many cases, follow up appointments can be useful to review any uncertainties about your 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 close to the patient’s home, and we will liaise with your GP and local services to ensure this happens.
Depending on your diagnosis, symptoms, and other factors such as the distance involved, you may be asked to attend regular clinic visits (usually every 2-6 months). We will write to your GP and any other professionals involved in your care following each consultation.
Although your appointments with your local Neurologist may sometimes be shorter than the consultations we are able to offer, it is generally helpful to continue to see them even if you are attending our clinic regularly.
Our team have devloped a remote health monitoring system know as TiM (Telehealth in Motor Neuron Disease). The TiM platform is a system through which people with MND and their carers can enter data about their condition on a weekly basis. Their answers are automatically analysed and are available to their MND care team, who can then take action.
Professor Chris McDermott conceived the idea and developed the system:
“We hope that the TiM system will improve the care and support we can offer patients and their carers by enabling us to respond to problems as they arise.“
Emily Goodall, a member of the Sheffield Motor Neuron Disorders Research Advisory Group, who represent patients and their families suffering from MND, said:
“This app has the potential to make a huge difference to patients with MND, particularly those living in rural areas where travelling to hospital is very difficult and you can feel very isolated.“
You can learn more about TiM here.
As with all NHS patients, your personal information is recorded in your medical records. These records are kept strictly confidential and held securely within the Sheffield Teaching Hospitals NHS Foundation Trust. We also record information about your symptoms on a secure, password-protected database that can only be accessed by our clinic team. 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 will never publish this information in a way that could identify an individual. Please let us 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?
If you are admitted to hospital, we can offer specialist support and advice to assist those caring for you. Please ask a relative or carer to call 0114 222 2266 and inform the Care Centre Coordinator that you have been admitted, or ask the hospital staff to contact us directly. An answer phone is available outside office hours. For urgent advice please contact MND Connect or your own GP.