One of the often unadressed consequences of an MS diagnosis is that you need to gain a new and unwanted expertise: you need to debug the services of your health care provider. Irrespective of whether you suffer from MS-related fatigue, walking difficulties or reduced vision, you will need referrals for rehabilitation services such as occupational, physical or vocational therapy or for adjusting splints or electric wheelchairs. Unfortunately, it is often a hassle for pwMS to gain access to the services they are entitled to. This is a hidden source of discrimination as it often requires quite a lot of administrative persistence and eloquence to gain access. Not speaking of the time spent on managing switchboards. Although I lack objective evidence, I feel these hurdles are likely to render people with a lower socio-economic background less likely to attend or complete rehab schemes.
It is very difficult to find objective data on the association between socioeconomic status, red tape hurdles and the extent of which people with MS access rehab services. It is even more difficult to quantify the extent of red tape. There are some limited data from the cardiology field. Cardiac rehabilitation after a myocardial infarct is one of the biggest determinants of functional recovery and thus mortality. Nonetheless, socioeconomic context (read: postcode) and socio-economic status have been associated with reduced participation in cardiac rehabilitation. The results of a study randomising people to financially incentivised cardiac rehabilitation vs. usual care among low-socioeconomic status patients suggested health care providers should consider boosting participation by providing financial incentives. In the UK, I have experienced myself how difficult it could be to get pwMS referred for physical therapy. Very often new paper referrals were necessary for problems that required ‘maintenance physical therapy’ such as spasticity.
In the Netherlands, red tapes are the equivalent of purple crocodiles. This association is based on an epic advertisement of – strangely – an insurance company. In short, the advertisement consists of a single sketch in which a mother and her daughter appear at the reception desk of a public swimming pool. The mother explains to the receptionist that the previous day her daughter left her inflatable purple crocodile at the swimming pool. The receptionist hands the mother a form which must be filled out on both sides and handed in the following day between 9 and 10 AM, while the purple crocodile which her daughter had lost is seen standing in a corner of the reception desk. The mother then points at the purple crocodile and says that “it’s right there.” The receptionist says in a sneering tone “yes, it is right there” but takes no action.
Have you had difficulties accessing rehab or other MS-specific services through your health care provider? Why? Do you agree it could be especially a hurdle for people with MS with a low socio-economic status? Please share!
Disclaimer: Please note that the opinions expressed here are those of dr. Ide Smets and do not necessarily reflect the position of the Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust.
Randomized Controlled Trial JACC Heart Fail
2019 Jul;7(7):537-546.doi: 10.1016/j.jchf.2018.12.008.
Financial Incentives to Increase Cardiac Rehabilitation Participation Among Low-Socioeconomic Status Patients: A Randomized Clinical Trial
Diann E Gaalema, Rebecca J Elliott, Patrick D Savage, Jason L Rengo, Alex Y Cutler, Irene Pericot-Valverde, Jeffrey S Priest, Donald S Shepard, Stephen T Higgins, Philip A Ades
PMID: 31078475, DOI: 10.1016/j.jchf.2018.12.008
Objectives: This study sought to examine the efficacy of financial incentives to increase Medicaid patient participation in and completion of cardiac rehabilitation (CR).
Background: Participation in CR reduces morbidity, mortality, and hospitalizations while improving quality of life. Lower-socioeconomic status (SES) patients are much less likely to attend and complete CR, despite being at increased risk for recurrent cardiovascular events. Methods: A total of 130 individuals enrolled in Medicaid with a CR-qualifying cardiac event were randomized 1:1 to receive financial incentives on an escalating schedule ($4 to $50) for completing CR sessions or to receive usual care. Primary outcomes were CR participation (number of sessions completed) and completion (≥30 sessions completed). Secondary outcomes included changes in sociocognitive measurements (depressive/anxious symptoms, executive function), body composition (waist circumference, body mass index), fitness (peak VO2) over 4 months, and combined number of hospitalizations and emergency department (ED) contacts over 1 year. Results: Patients randomized to the incentive condition completed more sessions (22.4 vs. 14.7, respectively; p = 0.013) and were almost twice as likely to complete CR (55.4% vs. 29.2%, respectively; p = 0.002) as controls. Incentivized patients were also more likely to experience improvements in executive function (p < 0.001), although there were no significant effects on other secondary outcomes. Patients who completed ≥30 sessions had 47% fewer combined hospitalizations and ED visits (p = 0.014), as reflected by a nonsignificant trend by study condition with 39% fewer hospital contacts in the incentive condition group (p = 0.079). Conclusions: Financial incentives improve CR participation among lower-SES patients following a cardiac event. Increasing participation among lower-SES patients in CR is critical for positive longer-term health outcomes.
True on so many levels. To navigate services you need 1) Research skills: the scarcer the provision, the more research is needed. (Unless you’re very lucky, asking your GP/hospital the simple question achieves little). 2) Verbal skills: to get you past receptionists and to phrase the voicemails correctly 3) Good judgement: applying lessons from your professional life to tell the good guys from the jobsworths, decide which battles are worth the fight and make decisions about your care based on self-knowledge and the ability to weigh up evidence. 4) money.
Working as a AHP in the NHS I would say the lack of provision for rehabilitation services is mainly due to workforce planning. Everyone with need for rehabilitation should be entitled, regardless of socioeconomic status. The reality is far different.
The problem is twofold. There are not enough existing rehabilitation specialists to cope with the demand, so you either do not get referred or when you are referred the appointments are spaced out to try an accommodate the clinicians caseload, which may not achieve optimum results.
Secondly their is a lack of understanding amongst many politicians and workforce planners to what good rehabilitation can achieve. With this failure to plan for the future the provision is likely to get worse not better as demand grows.
We need to start shouting from the rooftops that rehabilitation matters and that failure to plan for the future will stretch our existing services to breaking point despite dedicated hardworking AHP’s.
I write this as I sit in an infusion room at Barts on Day 4 of Lemtrada, the gold standard if you don’t have HSCT. This is my fifth DMT in 28, maybe 29, I lose count, years with MS. I am only getting this because of my efforts. Had I not engaged I’d still be on Tecfidera – a relatively average med.
You have hit the nail on the head, Ide. I spend several hours a week talking people through the byzantine tangle that is the NHS. Who or what is a waste of time, who isn’t, how to avoid being trapped in the adminisphere and how to break free if you are.
If you are newly diagnosed it is dreadful. Usually, it is the first time anyone has had to come into prolonged contact and there is the assumption of an outsider that once dx’d it will all go swimmingly, and everything will fall at their feet at the intended time (MRI, consultant appointments, MS nurses at the end of the phone etc). It is a shock when there are higgoughs.
There is the further assumption that they’ll just automatically be medicated with the best and most appropriate DMT. If that happens then they are lucky. This is my hobby horse: it isn’t that often that one hears of a patient who has been sat down and taken through the likely outcomes for the disease and what can be done in terms of drugs and personally managed interventions to mitigate the long term and usually inevitable effects of ignoring the seriousness of the illness.
My personal experience of that is nil. It has only been gained by following the thought leaders in the field – many of whom reside here on the MS Research Blog – as well as some notable American MS specialists. I have had to attack this myself – as have many others – and have zero experience of anyone taking the time to map out things. Only by looking around at other pwMS, realising how fortunate I have been, and talking to them did I realise that I needed to get a grip on my care as no one from the HCP side was going to make any sort of proactive intervention.
My tip is to get involved in any and all clinical trials. Earlier access to meds, more time to learn and understand the disease from the interested researchers, and better personal visibility as an engaged patient so they contact you when a participation opportunity arises because they know you’ll be an easy addition to the cohort they are looking to recruit as well as ask questions.
‘Why?’ is a brilliant word. ‘Please can you help me understand is also a very useful phrase. If you get pushback because someone is too busy or not bothered to help you understand then change. It is perfectly reasonable to ask for second opinions too. If you are passive you’ll just get bumped along in the mass of people who are not on the radar.
MS doesn’t stop. Ever. Even if you feel fine today and your MRI isn’t progressing the disease is not stopped. Stay engaged, you need to push for things. They won’t just come to you even though you think they ought to.
All sad and true.
We’ll believe you’ve lost the ability, the agility to compete in this obstacle course,
Just as soon as you complete this obstacle course..
I just don’t have the mental energy for the battle or the knockbacks or the stress of ms ‘services’.
It is all very much the same in the United States as well. Getting the services I need as opposed to what I am offered or provided is usually a big mismatch. Take into account that I am a bedbound resident in a nursing facility and there are cryptic rules that I am completely unaware of because the tome listing them is enormous and the people available to explain are either few and far between or nonexistent. And many of the rules are just ridiculous… like Insurance will not pay for a wheelchair that accommodates me, instead only the nursing facility Must provide one for me. The one I have now is for someone twice my size and I can’t even rest my elbows on the armrests. And another completely ridiculous fact of the Insurance is that insurance will only pay for physical therapy for 10 days, period. And we all know that physical therapy for pwMS is ongoing and usually never-ending.
Christopher, I so agree with you about mismatch in US between needs and offered services for MS. If you are unable to persuade the long term care facility PT, nurse manager, or administrator that it is harmful to your health to be in an ill fitting wheelchair, contact your state’s Long Term Care Ombudsman to resolve on your behalf. Their role is to advocate for residents at nursing facility. Assisted Range of motion exercises are being given? Maybe new goals for PT/OT for “new” issues are needed in new chair? Best Wishes
You need to push for what you need. And listen to comments on the lines of
“Since when are you a doctor?”
“Why do you think you know more than the doctors?”
“Stop reading stuff from the internet”
You don’t just hear such comments, you yourself wonder whether what you’re doing is right