The Motor Neurone Disease Clinic

The motor neurone disease clinic

In Addenbrooke’s Hospital we run a specialist clinic for people diagnosed with Motor Neurone Disease (MND). We are one of a network of care centres in the UK which are funded in collaboration between the MND Association and the NHS.

All patients diagnosed with MND are offered follow up through this clinic if they are within comfortable travelling distance. If you are not offered follow up through the clinic, you can request this via your consultant, GP or by contacting the co-ordinator. We will need to obtain details of tests you have undergone and your medical history.

In addition to face to face appointments, we are also able to offer telephone review or video consultation for patients who are unable to attend the clinic in person.

Co-ordinated care

It can be difficult as a newly diagnosed person to know where to access help and support. The care centre co-ordinator acts as a point of contact and can help you work out your needs and refer you to the appropriate team/service who can help.

Before your clinic visit

The clinic is held on Thursdays in the Arthur Rank Hospice and you will be sent an appointment letter (this includes directions) inviting you to attend. Disabled parking is available.

Where possible, the co-ordinator will aim to speak to you before you are seen in clinic. This can be useful in helping identify any specific areas you wish to discuss (or people you may need to see) ahead of your appointment. This is usually by telephone, but can be by email if you prefer.

Please also bring a list of your current medication and details of any other health professionals involved with your care. Often people find it useful to write a list of questions to ask at their appointment.

Who will I see at my clinic appointment?

The clinics are lead by a consultant neurologist with an interest in MND or by the MND care centre co-ordinator with individual therapists as needed.

Speech and language therapist (SLT)

The SLT advises patients and carers on how to maximise speech and swallowing function. They can also suggest alternative forms of communication.

Dietitian

The dietitian provides assessment of nutritional status and review of dietary intake. Diet, nutritional supplementation and alternative feeding requirements are assessed in conjunction with the SLT.

Physiotherapist

The physiotherapist can advise on exercises and stretches to maintain flexibility and prevent stiffness and pain caused by immobility. They can also assess the need for aids to support posture (i.e. foot splints and neck collars) and walking.

What will happen at the clinic appointment?

A comprehensive assessment of your condition will be made, and you will have the opportunity to ask any questions. It is quite normal for your appointment to be longer than one hour, especially if you are seen by several professionals.

What happens after the clinic?

We will send a clinic summary to you, your GP and all other health care professionals involved in your care. This helps communication between professionals and helps ensure you receive the support you need. The team will refer you to community therapists as appropriate and will communicate with them about your needs as required.

You may have regular follow up appointments in the care centre or if more convenient, through your local neurologist in one of the district general hospitals. Appointments can be rearranged for earlier review as your condition requires. We may also offer referral for respiratory assessment and support through Royal Papworth Hospital which provides this aspect of our MND service.

You are always welcome to contact the co-ordinator or therapists for support and advice between clinics, either by telephone or email.

How do I contact the service?

For questions or queries regarding any aspect of MND care, please contact the MND Care Centre team:

Address:

MND Care Centre
Department of Neurology
Box 165
Addenbrooke's Hospital
Cambridge University Hospitals NHS Foundation Trust
Hills Road, Cambridge, CB2 0QQ

Call the clinic on01223 216631
Email the MND clinic