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Norfolk MND Care and Research Network

Motor Neurone Disease

The Norfolk Motor Neurone Disease (MND) Care and Research Network was established in June 2017, supported by the MND Association, and officially opened in January 2018 by HRH Princess Anne, Royal Patron of the MND Association.

Our aim is to provide a co-ordinated and accessible service for people affected by MND and their families across Norfolk and Waveney. We currently care for around 90-100 people with MND.

 Role of the network

  • To be a single point of access for patients and families from the time of diagnosis
  • To provide clinics which offer a holistic assessment of patients’ needs and a supportive environment to discuss their care
  • To provide a co-ordinated link between the different professionals involved in a patient’s care, including those from both hospital and community services
  • To provide patients with accurate and timely information regarding their condition. This may include signposting and referring to other services, as appropriate
  • To offer patients opportunities to be involved in relevant research, if they wish.

About Motor Neurone Disease (contains sensitive information)

Motor Neurone Disease (MND) is a progressive neurological disease without curative treatment. The systemic nature of the disability resulting from MND means that patients become dependent on a wide range of health, social and palliative care services as their condition progresses. The incidence of MND is 2 per 100,000 and the prevalence of MND is 7 per 100,000.

Common signs and symptoms of MND include:

  • Muscle weakness, with loss of muscle mass (wasting) and movement and mobility problems
  • Muscle cramps and spasms, stiff joints, which may limit range of movement
  • Respiratory muscle weakness – people with MND may report poor sleep, vivid dreams, difficulty lying flat, increased daytime sleepiness, morning headaches, shortness of breath
  • Saliva problems – people with MND may experience thin excessive saliva, thick secretions, or both
  • Weakness of cough – our Respiratory Physiotherapist can help with this
  • Swallowing difficulties – artificial feeding may be considered at some stage
  • Speech and communication problems which may require low or high tech communication aids
  • Pain or discomfort as a result of other symptoms, positioning, immobility
  • Emotional lability – people with MND may cry or laugh excessively. In some cases, the emotional response can seem inappropriate – for example laughing at some sad news
  • Changes to cognition and behaviour – there are many features of this, but they may include disinhibited behaviour, apathy, lacking empathy, rigidity of thought, lack of empathy, language problems.

Clinics

As part of the development of the network, we are keen to make our clinics as accessible as possible to people with MND. We hold regular clinics at NNUH, Tapping House (in West Norfolk) and Priscilla Bacon Hospice. Patients can also be review in neurology clinics at the James Paget Hospital if preferred.  We are also able to offer telephone or video appointments. We use an optional telehealth system which enables our patients and families to update us regularly via an app.