Yesterday I had the honour of being a keynote speaker at a conference which focused on including patients in research. By this I mean people who live with illnesses should be equal members of the research team, deciding what will be researched and how the research is conducted. The phrase we often use is:
Nothing about us, without us.
When you get a chronic illness, such as secondary progressive MS, it often means you cannot work, or your ability to work is significantly reduced. In my case, I have a maximum of 10 hours per week. If I exceed this, which does happen sometimes, I will work less the following week, bringing the average back to 10 hours. In addition, I will pay in extra pain.
The government supports me with a social welfare payment, Disability Allowance (DA), which is a means tested payment. There is another support, Invalidity Pension (IP), which once you are in receipt you can avail of Partial Capacity Benefit. Both of these are modelled, it seems to me, on the Jobseekers payments (the support for people who are unemployed). My belief is DA and IP are structured incorrectly and do not support research of therapies or medicines.
DA should be for people who have, through no fault of their own, some disability which prevents them from being an equal participant in the workforce. It might be a missing limb, fatigue or depression. The list of disabilities is long, but the overall impact is the same, work is more difficult. There is an added complication, being disabled is expensive. For example, my electric and heating bills are greater. This is due to having to charge multiple devices (scooters, FES device, and a stairlift) to assist me in daily living, and because I cannot move well, I cannot generate enough heat in my body, so I need the heat on longer, and at a higher temperature.
Disability is expensive.
I see the DA payment as a support for these extra costs, not as an income, plus it also helps for those times when, due to my illness, I cannot work. This, in my case, is not easy to predict. It was a shock to me when I learned people in receipt of DA need to get permission to go abroad on a holiday, and we are not allowed to have more than two weeks of a holiday too.
Because this payment is means tested, it can be reduced because of the income of other people living in my home, and if I get some work. Finally, I am getting to my point of this post. At the conference we discussed why people who have experience of living with an illness should get paid if they are contributing to research, for helping to design clinical trials. If we get a payment for this time, then DA can be reduced, with implications for our medical cards (a support to make access to medical treatment free, or very low cost) too.
As a result, patients are reluctant to get paid for their work. On top of this, there is a risk (real or perceived) Social Welfare will think, if the work is unpaid, we are actually capable of work, and perhaps we are not disabled, or not entitled to get DA? This is a real obstacle for inclusion of patients in research. This is particularly true for people who maybe from sections of the community which are disadvantaged for other reasons. This means research cannot provide a robust trial, because they are excluded, both as collaborators in research and as participants.
What should happen?
I believe we have an opportunity now, because of the pandemic, to do a complete overhaul of the supports for people living with disabilities and/or chronic illnesses. This should include DA and IP (I will addressed this in another post). The new system should address the following points:
- Disability costs more, either in utility cost, or for equipment
- Research: There should be no obstacles to be involved in research
- Incurable illnesses: There should be no risk of losing this payment
- No Means test: The means test forces us to either be dependent on other for our income, or forces us to live alone.
- All supports should be managed by one organisation: Supports are available, but depending on what you need you might have to go to many different agencies who all have different ways of assessing the patient. Examples are: local authority for stairlift grant, HSE for a mobility scooter, employer or social welfare for aids and appliances to help with work, etc.
- Single contact person: This individual will be your case worker, ensuring you don’t get lost in paperwork, or are not aware of some support which is available.
I am sure this list isn’t complete, but I know if we work together we can find a model which is equitable, supports us to work, if we can, and doesn’t leave us below the poverty line, or dependent on others. Change must happen. It was a slap in the face when the government acknowledged at the start of the pandemic that €203 per week is not a living wage, and increase the Pandemic Unemployment Payment to €350 per week. Meanwhile, those who are disabled are still in receipt of the lower payment, or even less, if someone in their home is earning more.
I would like to see a system which encourages more people to be part of research. Why? The goal is to improve the quality of life of everyone, to the point where people living with a disadvantage are no longer disadvantaged. We may not cure this disease, or regrow the lost limb, but we can allow people like me to contribute to society. No longer sitting on the couch all day, watching the tv, but contributing to society, in some way. This will certainly improve the happiness of the nation. Now, that would be a fantastic result!!