Treatment and Forward Planning

There is only one licensed drug for Motor Neurone Disease and that's Rilutek or Riluzole. Clinical trials have shown that this can prolong life for maybe three to six months if taken for 18 months. There are lots of other drug trials in progress at the moment. There is lots of research ongoing throughout the world, looking at possible causes. Obviously, if they can find the cause, then they can work towards finding the treatment to try and address this. Researchers will be looking at the treatment of the cause, which would be, obviously, the ultimate. However, currently, it's much more treating the symptoms.

The symptoms in MND are widespread and therefore, you need a large range of professionals to meet these different needs. And they can be neurologists and GP, palliative care consultant and respiratory consultants. They're the main doctors that may be involved. Therapy-wise, as we mentioned, the physiotherapist, occupational therapist - there can be psychologists, speech and language therapists, dieticians. And also, other services such as wheelchair services, orthotics and importantly, hospice services. And also - obviously importantly - the Motor Neurone Disease Association, which is an amazing source of information not just for people with MND and their families and carers, but also professionals.

Social care services are also important to be involved, especially around benefits advice. And if there are more major adaptations needing doing at home, it's often social services that need to be involved. Carers, importantly, are entitled to what's called carer's assessments. So, as they're needing to do more for their loved ones, they're entitled to a carer's assessment and the patient, themselves, is entitled to what's called a needs assessment to make sure they get the care that is required.

There are various professionals that are involved in the care of people with Motor Neurone Disease and it's important that they work together in a coordinated manner. At Colchester, for example, we have a bi-monthly meeting, where we meet with the palliative care consultant, the MNDA Association visitors, speech and language therapy, dietitian, physios and occupational therapists. And we all sit around and we discuss everybody in Northeast Essex with a diagnosis of Motor Neurone Disease, and discuss that all the necessary things are in place. Check their mobility, that their breathing is being looked at and their wishes and choices for the future have been discussed.

One of the members of the team, [the physiotherapist] myself, would be involved in checking people's movements and, maybe, recommending exercises to help maintain range of movement and to maintain their ability to walk as long as possible. Often, this is linking in with orthotics. They may need splints if their feet are dropping and provision of walking aids. We also play an important role in patient positioning, checking for comfort and working together with the occupational therapist in providing sort of seating and wheelchairs.

The other role the physiotherapist often carries out is monitoring what we call ‘respiratory function’. So the physiotherapist will be able to test how well somebody's breathing is working. And also, whether their cough is still effective. If we find that there is a weakness, it's important that this is highlighted early and referred onto the respiratory consultant. Some patients may then need to go... Interventions such as a sleep study. This shows that the patient's ventilation at night-time - their breathing - is not very good. These are people that may benefit from the portable ventilation machine, known as the NIV, Non-Invasive Ventilation machine that supports their breathing at night-time, to enable them to sleep well, have energy levels the next day and it can improve quality of life and the length of time that people actually survive with motion Neurone Disease as well.

The occupational therapists play a vital role with providing equipment in a very timely manner. Some of these patients do progress very rapidly, so it's very important the occupational therapist kind of plans ahead and almost sees the progression, so that the right equipment can be in at the right time. They work closely with wheelchair services, to ensure the correct wheelchair is provided. And also, with social services, they will need to refer if more major adaptations are needed to a patient's home.

The speech and language therapist plays a very important role, especially in patients that are diagnosed with the progressive bulbous symptoms. So these are the symptoms of the weakness that affects speech and swallowing. They may teach the patient safer swallowing techniques and also advise on thickened fluids, maybe texture modification of food, so that they don't end up with the food or the drink in their chest causing chest infections and problems. They work very closely with the dietitian to ensure that people's weight is maintained and they have the optimum nutrition. Sometimes food supplements are recommended to make sure a number of calories are taken in by patients. And importantly, they meet with the patient who is having problems, to discuss whether a feeding tube may need some discussion. This is called a PEG and it needs to be done in a timely manner. So it's really important that it's discussed early and at the right time.

The palliative care consultant and the hospice team - that could be therapists and specialist nurses - play a vital role in supporting emotional and social aspects. They can also symptom control, so patients having pain, breathlessness; they're very good at supporting with those symptoms. We are very fortunate here at Colchester, we have St. Helena Hospice and they will often provide day services for patients and, possibly, in-patient stays for respite or symptom management if needed.

Palliative care consultant and hospice specialist nurses play a really important role in supporting people to make decisions about the care they would like, and the care they would like to refuse. And importantly, the end of life care. And this should be documented in our area, it's called ‘My Care Choices’. It's a website open to all professionals, and the patient's details are on there; whether they want to be resuscitated or not and choices like whether they would want to be tube fed with a PEG, whether they would want ventilation - maybe if they want antibiotics if they were to get a chest infection. So it's really important that those things are discussed and those wishes are known by all the healthcare professionals, and the family as well.

Not all neurological conditions need the involvement of palliative care consultants and hospice team, but Motor Neurone Disease, because it could be very rapidly progressing, then it's really important to involve this service.