A welcome from our branch President, Dr. Timothy Harrower
A Neurologist with a (very) special interest in MND
“As a clinician involved with motor neuron disease, I was delighted to be considered as a Presidential candidate for the MND Association. It is always with great admiration that I look on at how patients and their families cope at the time when motor neuron disease is taking its toll. To be involved more than simply as the “clinician or the medic” is not only humbling but also inspirational, as I can draw so much from the courage I see in the MND family in our region.
The road travelled by families during the time that MND is an unwelcome intruder is painful and very tough, but the MND Association makes it bearable, and is therefore extremely valuable. I personally see the charity’s value every time I run the MND clinic through the support delivered by the MND multidisciplinary team.
Those of you who have had to sit through my lecture on MND will have heard me stress the point that the MND Association is the core strength that provides the appropriate support which I, as a clinician, simply cannot access. This is a testimony to the fact the MND clinic exists because of campaigning by MND Association to the local authorities.
The local branch will have a major role in improving the overall service, where this is required, and often feedback through the association is very helpful for us whilst planning and delivering a service which at its heart must be personalised. The local branch is well placed to help steer us at this level rather than some national directive from the central NHS in their ivory towers of London (important as they are).
I would like to thank all of those that help with the research that comes out of the MND clinics. The TONiC studies (Trajectories of Outcome in Neurological Conditions), which many of you have contributed to, has produced, at the time of writing, two peer-reviewed papers (see below for references) and has given us ideas about the particular aspects of quality of living of those affected by MND in a manner and scale which we can take to authorities to negotiate a better “deal” for our MND community.
I continue to seek out opportunities for patients to be involved in research which may allow patients access to novel potential (experimental) therapies. I hope that we will see therapies emerging which we can offer patients and this hope I endeavour to turn into reality by having our clinic as a trial centre to stop the need for travel to other centres like London or Oxford.
Finally, I would like to thank the MND Association generally, and specifically the local branch where volunteers have made a difference to families who have had to deal with MND. I see the enthusiasm of this special group of people and feel reassured that the branch will go from strength to strength to provide the care help and support that is required.”
The relationships between symptoms, disability, perceived health and quality of life in amyotrophic lateral sclerosis/motor neuron disease.
Young CA, Ealing J, McDermott C, Williams T, Al-Chalabi A, Majeed T, Burke G, Pinto A, Dick D, Talbot K, Harrower T, Walsh J, Chandran S, Hanemann CO, Mills R, Tennant A.
Amyotroph Lateral Scler Frontotemporal Degener. 2019 May 22:1-11. doi: 10.1080/21678421.2019.1615951. [Epub ahead of print]
Development and validation of Spasticity Index-Amyotrophic Lateral Sclerosis.
Milinis K, Tennant A, Mills RJ, Al-Chalabi A, Burke G, Dick DJ, Ealing J, Hanemann CO, Harrower T, McDermott CJ,