The 25th annual Symposium in Brussels and I’m blogging on the care practice session, chaired by Mitsumoto and Meyer! A great attendance this year and this session a great start to day 2. The Copper room is light with great acoustics and it’s tiering makes for great visibility.
First up was Dr Meyer describing the emerging role of eHealth in MND/ALS. Wouldn’t it be great if we could achieve his vision of systems that are joined up in IT, which talk to each other, and which comprehensively ensure that the patient is at the centre of all their records, hand held, and only 1 click away for all? Our own Chris McDermott from Sheffield presented the unique Sheffield Snood – an innovative neck collar that allows full flexibility of positioning through addition or removal of supports. I am hugely privileged to have been invited to judge on this some time ago. Now all that is needed is some mass manufacturing and entry to the market. Any SMEs out there that are interested? You can read more about this on the MND research blog.
Simmons from the USA followed with a description of pain in ALS/MND. We are often told that there is little or no pain featuring in MND. However, Simmons’ research notes that up to 85% of patients experience some degree of pain, with 23% reporting needing strong pain relief medications, and 20% reporting stating that the pain is unbearable – sobering thoughts indeed, with pain in the neck, back and legs being the most common. Certainly there is a need then to include the Brief Pain Inventory into our assessment and review processes.
Seeber (Netherlands) spoke about the need for advanced care planning. He argued that this is under-utilised particularly in the early stages of the disease. However, early involvement enables palliation of symptoms and the ability of the person to make Advanced Directives which are readily understood by all. What was good to hear was that 40 ALS teams in the Netherlands all follow a national intervention protocol, so not the inconsistency that we sometimes see in the UK.
A great session with obvious take home messages as described above. Lots to think about and challenges to meet if we are to ensure the best provision of the best care whilst we continue to seek the cause and subsequently a cure for ALS/MND