I called to see my friend Jane recently having heard that she had been quite unwell, Jane suffers with relapse remitting multiple sclerosis that can flare at any time, she has been diagnosed since her early thirties and has progressively seen a deterioration in her health in the last few years, she is now 52 years old, the problems are not just associated with multiple sclerosis but also its secondary impact on her weight and mental health.
For me I have not seen the disease in action so to speak, living with MS means people mask the symptoms to keep from being fussed over, or if they work in case questions get asked about their suitability to the workload they have. Sufferers hide themselves away when they are having ‘bad days’. I am reminded of the recent Roche campaign that talks about how an MS relapse can feel like not all the wiring and lights in the house are working, that feeling of sporadic pain and flashes of light and dizziness as if your own body’s wiring is malfunctioning, it must be so distressing and hard to cope with especially if you must still get on with family life and caring for children or keep working till the end of the day.
With four children and a husband who works long hours she has managed to keep the household going by taking on more and more help, first with the domestic chores and then with things like transport – she actually does not like to drive anymore and relies on public transport and her friends and family.
After having chatted for a while her husband John comes into the room, he is an amazing man, he holds down a full time demanding career during the day and it there to pick up the household chores at night, caring for Jane when she has had a bad relapse and needs help with moving around or just a good chat because she feels so low sometimes. I do think she is lucky to have John so able to cope and would hate to imagine how anyone with the same condition copes from day to day, it must be so isolating.
So, the three of us got onto the subject of the connected care work I am involved with, terms like m-health and digital health really did not mean anything to them so I explained that pharmaceutical organizations and charities are investing in devices to help with the monitoring of health issues and chronic diseases a bit like the Fitbit and Apple watches and the apps on her mobile phone. I explained that things like body sensors, bed monitoring devices and mobile phone apps are all called mhealth solutions and that the intent is to collect real time objective data about how a patient is managing their condition between appointments and how eventually this information will be sent to her doctor so that he can tie together what information has been collected and review it along with her at her next appointment, interestingly she noted that her appointments are quite sporadic and she can go up to six months between appointments or have one every month depending on the relapses. She is really quite excited by the concept, she laughs at this point as she says it is impossible to remember every symptom or change in her health when she sees her doctor, she can’t remember what socks she wore last week let alone how she felt during the last relapse. At this point I remember how she says she feels like she has had MS all her life and that it is such a way of life that she doesn’t recognize how ill she can be when a relapse happens and it made me think of the old Jane, the one that danced all night long at parties and sang on stage at the local amateur dramatics club, I ask how she copes with the lifestyle changes, she is mostly upbeat but I can tell it has put a dark cloud over her life and maybe it is quite hard to explain something that can consume you striking at any point. I then go on to talk about family support, did she get access to counseling and she explains she has all sorts of help – dietitians to help her keep healthy and mobile, her local MS group meet quite often in the church hall but no nothing that is just for her and John, one to one, she doesn’t think the healthcare system could afford it as so many people suffer. I explain that MyHealios offer this type of support through family behavioral therapy that is aimed and educating and providing ways to change, to cope, whether it is for cognitive functions like memory or perhaps how the family can adapt to make it easier for them to get along and care without seeing the patient as a burden. I explained that MyHealios look to help monitor symptoms and the details about attacks along with things life sleep quality, she lights up at this and says, ‘funny you mention that, but I swear if I could sleep better I would cope with the condition better, I just end up napping too often and then not sleeping at night’.
We finally get onto other subjects as I fear I am opening up some difficult subjects for Jane but as I drive home I cannot help but feel that by a coordinated approach through real connected care, Jane and John would feel some of the burden lifted and that there were ways to help monitor her health that would improve her care and the communication with her specialists.