My post on one of my patients from last week with onychogryphosis (poor toenail hygiene) has generated quite a discussion on the blog and within Barts-MS. My focus on hand function, and using it support our #ThinkHand campaign, may have been misguided. The real issue here is neglect and dare I say possible social deprivation. Why did this patient develop onychogryphosis? That’s the real issue. Why did he/she neglect themselves? Where were their family, friends, carers, etc.? How do we let her/him slip through the cracks? If they are neglecting their feet, what else are they neglecting?
People with MS are no strangers to deprivation. If you are reading this blog the chances are that you are warm, safe, loved and cared for by someone. This clearly does not apply to all pwMS. What should we be doing to address the problem? Is it simply a political problem? Clearly there are more questions than answers.
Owens et al. Rationing and deprivation: disease-modifying therapies for multiple sclerosis in the United Kingdom. Eur J Health Econ. 2013 Apr;14(2):315-21.
Unlike other industrialised countries, the UK deferred the routine introduction of disease-modifying therapies (DMTs) for multiple sclerosis (MS) in favour of an experiment. Between 2002 and 2005, MS sufferers were identified, were offered DMTs only if deemed suitable by their physicians, and were monitored thereafter to assess long-term outcomes. It has been demonstrated for other therapies that judgements about suitability to receive treatment are conditioned by the patient’s deprivation status. We hypothesised that this would have been the case for DMTs also. Using individual patient data for samples in Nottingham and in Glasgow, we matched patients’ postcodes of residence with deprivation scores and confirmed that patients from more deprived areas were less likely to have been prescribed DMTs. A more detailed analysis of the Nottingham data revealed two channels through which this outcome was effected. First, people from less-deprived areas were more likely to possess clinical characteristics, such as less severe disease severity and shorter duration of the disease, that enhanced their suitability for treatment. Second, the analysis of the clinical notes detailing patients’ correspondence with the medical teams suggested that less-deprived people were more able to exercise a voice capable of influencing physicians’ prescribing decisions.
I think talking about the problem is a good start. Raising awareness that foot care/nail care is important in MS. Along with tooth care and eye care.
Things that make you go, "Hmmmm".
I bought some long handled nail cutters but the lack of control of my fingers in my left hand, and the shaking when I reach out makes it impossible to use them. I made enquiries about a nail cutting service held at the local clinic but was told it was for pensioners only. Luckily my husband does my nails for me but if I didn't have him I don't know how I would manage. I understand that diabetics get free foot care, couldn't pwms and other conditions be offered assistance with foot care too?
Some pwMS report using an electronic nail file helps them and has an automatic cut off so you don't press down to hard.
It's good to know that i was simply not being paranoid. Lo SEP triage in certain postcodes? Scandalous. Certain inadequacies in service provision make sense now that i know questionable policies may have been pursued.
Prof G you highlight very well how awful this disease really is!