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The working life of a Motor Neurone Disease Specialist

Author: St Oswald's Hospice
13 October 2017

Dr Lisa Cairns has worked as a Motor Neurone Disease (MND) Specialist and Occupational Therapist at St Oswald’s Hospice in Newcastle for 17 years. Here she explains what her day-to-day role involves and what she enjoys most about it, and Geoff, one of her patients, tells us how valuable her support is.

Lisa predominantly supports patients in the community and she takes a holistic approach to their care, including making bespoke devices for them herself, organising trips inspired by their hobbies, and using hypnotherapy as a form of treatment. Her role is funded by the Motor Neurone Disease Association (MNDA). 

“I often get involved in a patient’s care when it is believed there is no other solution. I spend a lot of time creating bespoke gadgets for patients, helping them to have quality of life, and live independently for as long as possible.

Because MND leads to muscle wastage, people with the condition begin to find everyday activities increasingly difficult, such as gripping, walking and swallowing.  I do not believe in a “one fits all” approach as the condition progresses differently from person to person, so everything I create is custom-made to each individual patient.

The devices all have different purposes and sometimes work by capturing the tiniest of movements. This might include helping someone to hold a pen or cutlery, assisting with neck support or a gadget that helps someone to use their Environmental Control System in their home.

Neck support collars are amongst one of the more common requests. Neck weakness is often a symptom of MND, there are standard collars that you can buy but some people might not be able to tolerate these, or it might be that their neck is weaker at one side, so I adapt a standard collar for them. This involves taking a person’s neck measurements, making a template, and adapting the collar using low temperature thermoplastic. The only thing about the collars is that I wish I could work with a fashion designer to make them look more attractive!

The original idea to use hypnosis for MND came from a patient who had tried medication and radiotherapy to one of her salivary glands with little benefit. MND patients produce normal amounts of saliva, but in some patients the disease impairs swallowing, which causes the saliva to spill out of the mouth instead of being swallowed.

Most people have only heard of hypnosis on TV, so when a patient is first referred they often have many misconceptions and worries about losing control. They soon realise however, that clinical hypnosis actually helps them to take control of their saliva secretions, which in turn can help with their self-esteem and improve their quality of life, as they are more willing to try new activities.

My favourite thing about the role is being challenged with something I have not come across before and coming up with a solution. Without the support of my colleagues this would not be possible - particularly those at the MND Care and Research Centre at the Royal Victoria Infirmary in Newcastle, the MNDA, and at St Oswald’s.”

Geoff’s story

In addition to the practical side of care, St Oswald’s ultimate aim is to support patients to enjoy their quality of life. Lisa has been integral in arranging trips for patients they thought would no longer be possible.

Geoff Hutchinson, from Northumberland, is one of the patients who has benefitted from Lisa’s care and support. One of the trips she organised for Geoff was a flight in a glider plane.

“At my first meeting with Lisa, she complimented me on a tool I had made to help me use my keys. It was clear from that moment we would get along fine. An hour later, I left with a device to help my fingers grip a spoon. As they grew weaker and my wrists, elbows and shoulders also went, she would invent a new modification. Over a year I benefitted from about five or six of these.

It was not just eating where I needed help. As my arms grew weaker, getting dressed was a major problem, especially pulling trousers up. After a short home visit, she came up with an idea of using Velcro and a riser recliner chair. Not long after came the aptly named “shirt lifter” with which I could raise my arms over my head.

These ideas were invaluable as I tried to preserve my independence. Never did she suggest getting family to help me or point out that each of these wonderful inventions would be rapidly overtaken by my deterioration.

As well as all this, she has made door openers, finger straighteners, and a personalised hypnosis CD to help me relax.  She organised a pub outing with me and a couple of fellow patients, arranged a quarry visit to help with my interest in geology, and most recently arranged for me to take a flight in a glider plane. I used to be a private pilot but due to my condition it is not possible for me to fly anymore.

I am now disabled from the neck down and my speech is compromised. My main contact with friends and family is now email. I would be unable to do this or even prepare this note if it had not been for Lisa obtaining an I-Gaze optical control system. Nothing is too much trouble for her.”

For more information visit St Oswald’s Hospice

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Comments | 1

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Richard Parker

Lisa Cairns and the work she does optimises all that Hospices should be, creative , innovative, leading and developing service functions and models as well as acting collaboratively with both statutory and other third sector organisations.
St Oswald's professionally encouraged and financially supported Lisa and many of her colleagues to work in this way,which is why it's seen as partner in the local healthcare provision and as a consequence markedly increases its ability to influence care beyond its own direct reach and boundaries .

14/10/2017 22:18:34


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