Demos has a long-standing interest in the social and financial impact of disability and health conditions. People living with serious health conditions can face a significant financial burden, a large part of which is the extra costs resulting from looking after one’s health or undergoing treatment. In new research released today, Demos found that people with motor neurone disease (MND) incur average regular costs of £9,645 per year – this includes care costs, increased energy bills, travel in areas where public transport is inaccessible, and so on. They also incur one off costs (such as adapting their home or vehicle so it is wheelchair accessible) which typically amount to at least £2,175 over the course of the disease.
The scale of the extra costs we uncovered are staggering. However, our experience in assessing the financial impact of disability and health conditions has taught us that extra costs are only one side of the story. It is also vital to capture the hidden extent of unmet need: the things people go without in order to manage their finances.
Unmet need can’t be quantified in the same way that an extra cost can. When someone pays £110,000 out of their own pocket to adapt their home (as a participant in our MND research did), that’s a clear indicator of financial impact. In contrast, unmet need normally shows up as a cost of £0 – if someone has gone without something, then there is no spending to record. In some cases it can even show up as a reduced cost – for example, our survey showed that people with MND typically spend less on leisure than they did before diagnosis. But this was often because they were feeling the pinch in other areas of their budget, and had made a deliberate choice to curb their leisure costs. Those who are continually forced to make sacrifices or trade-offs in order to make ends meet may not show up in survey questions about out of pocket spending, but they can face the biggest financial burdens, with disastrous consequences for their and their families’ wellbeing and quality of life.
Careful interview work is needed to capture unmet need amongst a population, using questions such as:
- What, if anything, have you gone without in order to minimise your spending?
- Why have you gone without it?
- What are the implications of not having it?
Asking why someone has gone without something can be very illuminating, as an unmet need in one area of a person’s life can create further unmet needs in other areas of their life which they might not mention at first. When you identify one unmet need, you can often identify many others by working backwards. For example, we spoke to the wife of a person living with MND who described how their family’s leisure costs had gone down since her husband’s symptoms began. When probed on why this was, she explained that she and her husband could not travel very far as he did not have a powered wheelchair – the NHS wheelchair services had made a mistake with their application months ago and the new wheelchair had not yet materialised.
An unmet need can not only create further unmet needs – it can also create new needs that would not have otherwise existed. This is why the third question about implications is so important. In some cases, the extra needs generated outweigh the benefit of making the sacrifice (or not receiving sufficient statutory support) in the first place. Consider an individual who provides care to their partner with MND as a result of not being entitled to formal care. Our research shows that family carers experience extremely high levels of poor mental and physical health, sometimes lasting long after bereavement from MND which is, after all, a terminal condition. We found poor health was preventing many carers from re-entering work long after they had lost their relative to MND, grieved, and were ready to start working again. It was affecting their own sense of wellbeing and income, but also generating costs to the state in the form of benefits and NHS costs. From a long-term perspective, identifying and addressing unmet need benefits the economy and state as well as individuals.
Demos began our course of work in this field some years ago with our groundbreaking research Counting the Cost, where we looked at the social and economic impact of disability. The themes of reduced income, increased costs, and unmet need were all too familiar. Our subsequent work has looked at the cost of being diagnosed with cancer, and cervical cancer specifically. We will be continuing to explore these themes from new angles, including the impact of different conditions, and how the financial impact affects one’s wider circle of friends and relatives, in the coming months.