Norfolk MND Care and Research Network
The Norfolk MND Care and Research Network was established in June 2017, supported by the MND Association. The Network was officially opened in January by HRH Princess Anne who is a Royal Patron of the MND Association. Our aim is to provide a coordinated and accessible service for people affected by MND and their families. The Network operates from the Norfolk and Norwich University Hospital, but serves all people in Norfolk living with MND.
Role of the network
- To be a single point of access for you and your family from the time of diagnosis.
- To provide clinics which offer holistic assessments of your needs and a supportive environment for you to discuss your care.
- To provide a coordinated link between the different professionals involved in your care, including those from both hospital and community services.
- To provide you with accurate and timely information regarding your condition. This may include signposting and referring you to other services as appropriate.
- To offer you opportunities to be involved in relevant research if you wish.
As part of the development of the network, we are keen to make our clinics as accessible as possible to people with MND. In addition to a clinic each month, we also have dedicated MND clinics at Cromer Hospital, Beccles Hospital, Queen Elizabeth Hospital in King’s Lynn and Tapping House (the Norfolk hospice.)
The core team
Our core team includes Consultant Neurologists who have expertise in diagnosing MND and its management. We also have a Palliative Care Consultant who has expertise in symptom management and supportive care. Our MND Respiratory Physiotherapist provides specialist care for anyone experiencing difficulties with breathing or a weakened cough.
The MND Care and Research Network Coordinator is Helen Copsey (Tel: 01603 647221, 07788 597021 or email: email@example.com) who may be contacted for support and advice. Alternatively you can speak to our MND Administrator on the same number who will pass on your message to the most appropriate member of the team. If you are unable to reach the cor MDN team, you may wish to contact your Neurology Specialist Nurse or key worker for advice.
In the clinic you will usually have the opportunity to see members of our core MND team as described above. In addition, some of our clinics involve the following people.
- A researcher from the University of East Anglia (UEA).
- A representative from the MND Association
- Medical or health care students observing the clinic
- Members of the local community health social care teams
Please tell us if you would prefer to just see your core team.
The Network team
It is important to emphasise that the wider Network team consists of a range of health and social care staff from across a number of specialities, including your GP and neurology specialist nurse. They will support you and can often see you closer to home, in between your clinic appointments.