The Consultant will have the referral letter from your GP, Neurologist or other doctor. They will ask you questions about your health, symptoms, your family history and any tests that have already been done. They will also conduct a physical examination.
Having made this assessment, and reviewed the results of any tests that have already been completed, the Consultant will give you information about the diagnosis and talk about the management options available. There will be an opportunity for you & your family/carers to ask any questions you/they may have.
Following the assessment you may be referred to another doctor or hospital for further tests. Some tests can be done on the same day but some tests will need to be done on another day. You will be sent an appointment letter(s) for this.
The MND care coordinator may also be present during your consultation. Other members of the multi-disciplinary team may also be in attendance in the clinic to offer advice and support. The MND care coordinator can refer you to other professionals within your local health and social care team:
- Physiotherapists will advise on exercises and stretches to keep you flexible and to prevent stiffness and pain caused by lack of mobility. They can also provide guidance on your posture and positioning. They will assess whether you need aids to support your walking. They can also show you how to do exercises to help your breathing and assist coughing.
- Occupational Therapists will assess your ability to perform tasks and give advice on techniques & equipment that might help you. They will also look at possible adaptations to your home that could make it easier for you to maintain your independence.
- Speech and Language Therapists will advise on how best to maintain and maximise your communication and swallowing. They can also suggest alternative forms of communication & can explore with you ways of accessing communication aids.
- Dietitians will offer advice on your nutritional status and can review your dietary intake. Diet, nutritional supplementation and alternative feeding requirements are assessed in conjunction with the Speech and Language therapist.
- The Palliative Medicine team offer expert advice on controlling symptoms, emotional advice and advance care planning. Referrals can be made to the Palliative Care Consultant and to your local hospice team. The hospice will be able to provide some support at home too.
- The Respiratory Medicine team will assess and monitor your breathing regularly if needed. If additional breathing support is being considered you will be referred to the joint MND and respiratory clinic at the Bristol Royal Infirmary (Sleep Unit) for advice and management. Respiratory equipment is provided by the team via this clinic.
- Neuropsychologists will provide assessment of your emotional and psychological state and provide strategies that may enable you to cope better with your illness
- The Primary Care Team (GP, Community Nurses and Community Matrons) assist in coordinating your everyday care at home.
- The Social Care Team can assess your practical care needs and negotiate the most appropriate way of meeting them for you. This will include supporting those who may already care for you.
Follow-up appointments are offered on a regular basis, usually every 2 to 6 months. Your follow-up appointments will either be with your Consultant or the Neurology Specialist Registrar.
Contact Bristol MND
MND Care Coordinator
Telephone: 0117 4140803