Support available from professionals
Support is available with managing any symptoms or difficulties a person living with MND may experience. This may involve getting aids to assist you with daily activities, having equipment to help with symptoms, medications, hands on treatment and adaptations within the home.
Along with the doctors a number of healthcare professionals can help you with symptom management.
MND Specialist Nurse
A specialist nurse acts as a single point of contact and provides support in the following ways:
- Offers advice and information about MND
- Review symptoms on a regular basis
- Advise on symptom management
- Liaise with your GP and consultant regarding treatments and medications
- Liaise with other healthcare professionals who may be able to help you
- Co-ordinate your care
Dependent on your needs, we can offer advice/treatment in a number of areas such as:
- exercise programmes
- provision of simple splints or aids that improve function or posture
- fatigue management strategies
- advice regarding falls, including reducing the risks
- specific physiotherapy techniques to treat individual needs e.g. Joint or muscle stiffness, pain
- advice on positioning and posture ,moving and handling issues and overcoming functional difficulties
- We liaise closely with other professionals (Occupational Therapists and other members of the team) in providing specialist equipment.
An occupational therapist is concerned with your ability to perform activities you consider important and meaningful in your lifestyle. They can advise on various ways of balancing your abilities with the demands of daily living activities in self care and household chores. OTs are also concerned with work and leisure activities.
Assessment and intervention can involve:
- Provision of equipment to assist bathing, dressing and kitchen tasks
- Suggestion of the best and least effortful way to carry out daily living activities
- Adaptation of your home environment to meet your needs
- Use of assistive technology to control your home
- Making splints to maintain hand function
- Prescription of seating and wheelchairs
- Advice on work and leisure related issues
Speech and language therapist
The role of the Speech and Language Therapist (SLT) is to assess for any changes in your ability to swallow (dysphagia) or communicate. Support the speech and language therapist can offer:
- Assessment of swallowing and eating and drinking
- Advise on appropriate textures of food and fluid (including medications)
- Advise on how to reduce coughing and the risk of aspiration pneumonia when eating and drinking
- Assessment of speech and communication
- Provide strategies to help you communicate more effectively
- Provide aids or equipment to assist with communication in liaison with the Leeds communication aids service (LCAS)
Dieticians can support in the following ways:
- Fortifying normal foods to maximise nutritional intake
- Adapting the textures of normal foods and fluids. This can range from soft –moist, fork mashed, puree foods, naturally thick fluids and how to thicken fluids with thickening powders
- Recipe ideas to increase variety;
- Practical solutions to ease food preparation along with physical eating and drinking difficulties.
- Recommending prescribable nutritional supplements;
- Discussing tube feeding as an option for topping up oral intake or to meet full nutritional / hydration needs and to administer medications
- Tube and stoma care.
As your needs change you may find it is more difficult to manage well at home or within the work environment. Social workers can help with issues around housing, care, and work related issues and benefits.
Support the social worker can offer:
- Assessing needs in consultation with the rest of the team
- Liaising with other agencies, home care and support staff
- Organising a package of support, care and resources
- Helping patients to adjust and adapt to a changed lifestyle
- Helping people find alternative accommodation
Respiratory specialist nurse
If changes in breathing mean you start to feel unwell it may be helpful to manage symptoms by using a ventilator (NIV). The respiratory specialist nurse can advise whether this is appropriate and if so the type of machine which may be best for you to use.
Support the respiratory specialist nurse can offer:
- Assess whether a ventilator is needed
- Help you to manage using a ventilator
- Review your symptoms regularly
One of the symptoms of MND is weakness of the breathing muscles and it may be useful to know if changes are occurring early and this can be identified by performing breathing tests. The respiratory physiotherapist can help by offering information and advice on all issues regarding breathing and secretion management.
Support the respiratory physiotherapist can:
- Discuss all issues regarding breathing difficulties
- Advise on breathing exercises
- Advise on secretion management
- Advise on using ventilators
- Perform breathing tests
- Review your symptoms regularly
The Motor Neurone Disease Association (MNDA) and its local branch
The MNDA is the only charity which supports people with MND. It's aim is to ensure that people affected by MND receive the care and support they need and want.
The MNDA can provide:
- Information on all aspects of MND
- Specific pieces of equipment / loan equipment
- Local support
- Volunteer visitors
- Is sometimes able to provide financial help.
- Fund research into treatments.
The local branch is there to offer you, your family, friends and carers help and advice in living with MND. The group can arrange social outings and meetings, practical help and advice and also liaise effectively with the MND team to co-ordinate care
Care centre co-ordinator
The care centre co-ordinators role is develop the MND service locally and co-ordinate the services for each individual patient according to their needs. This is done by liaising with multidisciplinary professionals within the community and hospital services.
The care centre co-ordinator assists with
- Patient reviews either at home or in clinic by the multidisciplinary team members
- Ensure regular audit of the MND services
- To ensure provision of specialist advice, education and support to patients, their carers and other health care professionals regarding the management of MND and the symptoms associated with it.
- To liaise with the MND Association Regional Care Advisor, community teams and therapists to promote more effective communication and co-ordination of care across primary, secondary and tertiary care services as required by people with MND and the development of patient care pathways
- To ensure the Leeds MND Care Centre has a high profile regionally and nationally.
MND wider team
MND patients can experience a wide variety of symptoms for which input from multiple disciplines are required. Formal links are in placewith other named professionals to assist in the management of these symptoms. These include
- The gastrointestinal team - who can place a feeding tube if required
- The Dystonia team/rehabilitation team - who can assist with botox injections to relieve muscle stiffness or excessive saliva secretions
- The psychologist - who can offer strategies and advice on how to deal with emotions and your feelings
- Palliative care team - for provision of support for symptom management and end of life care