People living with long-term pain and illness need social security

In this blog I cover some of the difficulties that people with long-term pain and illness face with the UK benefits and welfare systems, and why governments should take on a deeper meaning of social security to improve health outcomes.

The social security system in the UK administers pensions, income support, health/disability-related payments, including Carer’s Allowance, and Personal Independence Payment (now Adult Disability Payment in Scotland), which helps people to live with the limitations and additional cost of disabilities (1).

Basic levels of income are needed to live a healthy life (2). In recent years, loss of social security payments and austerity measures have resulted in increased deaths and reduced life expectancy in the poorest areas (3,4). Recent proposals by the UK government to introduce further welfare cuts are therefore concerning, with potential to deepen health inequalities. I will return to government proposals at the end of this blog.

Some people are unable to undertake paid work due to illness or disabilities – they have the right to live as fulfilling lives as anyone else. Some may experience a relatively short period of pain that resolves (5), and not come into direct contact with the social security system. For others, distinctions between health, illness, pain, disabilities and capacities for paid work are less clear. I want to discuss this further from my perspective as a chronic pain physiotherapist and researcher.

The ‘clinical’ problem…

Many of my patients who develop chronic pain during their adult life often cannot continue in the same work roles as they did pre-pain and need to adapt work if possible, change jobs or stop work, bringing financial implications. When I meet patients initially they may be struggling to continue at work, with periods of sick leave, experiencing pain flares and often carrying a significant emotional burden, worrying about what any change will bring and mean for them. Most of my patients actually have multiple long-term conditions (MLTCs), and many have caring responsibilities, meaning that in terms of ‘work’, they also carry out unpaid and condition-management work (the tasks and burden involved in effectively managing any health condition). While they may have many conditions and symptoms to manage, pain often dominates, meaning that people find it difficult to carry out daily tasks, sleep and follow exercise advice.

Adjusting to chronic illness and the emotional impact of the benefits system

Experiences of my patients are borne out in research showing that there can be a sense of shame and guilt and that people can internalise stigmatising attitudes when it comes to claiming benefits, even if they are entitled to them (6,7). A person with chronic illness has to take stock of changes to their abilities, the meaning of any diagnosis and prognosis, which may be uncertain, and depend on access to quality care including rehabilitation. The processes of coming to terms with this and navigating systems can be complicated by judgements about self-worth and expectations (of society and the individual), and by stigmatising attitudes about disabled people, benefits recipients, people with pain and those who take drugs (6–9). Many find interacting with the benefits system stressful and dismissive, and patients are required to prove that they are ill (often running counter to the goals of healthcare) (6,7). The introduction of Universal Credit last decade led to further food insecurity, crimes of survival such as shoplifting, and worsening mental health (7) – it is understandable, therefore, that disabled and ill people may be incredibly concerned at prospects of further welfare reforms. 

Stress and psychological factors are well known to influence pain perception, with increased distress associated with the duration and severity of chronic pain (10, 11, 12). Mental health conditions and pain affect younger, working-age adults and occur more often in areas of socioeconomic deprivation (13). Marginalisation and stigmatisation can also lead to higher levels of pain, and are sources of inequities (8,14).

Approximately 1 in 20 people live with severe chronic pain that is intense, has a significant impact on everyday activities and mental health, and often brings them into contact with the benefits system (15). People with chronic pain and MLTCs are usually asked at healthcare appointments to live with limits and pain and to undertake condition-management activities – however, workplaces and social security also need to account for the realities of chronic illness.

Fix the systems

Recent evidence shows that people with health conditions are increasingly leaving the workplace, and are more likely to do so without flexibility and control over roles and tasks (16). Adapting the workplace is important for successful return to work, but the characteristics of chronic pain, including unpredictability, limited mobility and poor sleep, can bring challenges (17). To improve uptake of paid work by people with long-term health conditions we need a more proactive approach to worker health and earlier intervention, creating supportive and secure working conditions and benefits arrangements (16).

The language and policies promoted by the UK government and politicians in recent years has been criticised for stigmatising sick and disabled people (6,7). Given the detrimental impact this can have, we need both responsible dialogue and practical solutions that shift the focus towards inclusion and prevention. Navigating the welfare and social security systems is recognised as complex, with different funds and sources used – income maximisation and welfare advisers are therefore recognised as ways of lessening health inequities (18).

We need to get better at seeing the bigger picture of health and pain – alternative societal and economic models that centre health and inclusion could facilitate a shift in our thinking and approaches to prevention, where possible, and adaptation to the realities of chronic illness in ways that work for all (19).

Current reforms to social security

The pushback against UK government proposals to cut welfare has seen solidarity across civil society from disabled groups to those concerned about the long-term impact on health. Frances Ryan (a disabled journalist) has extensively documented concerns and responses in her newspaper columns.

The UK government is actively reforming work and social security arrangements – if you want to express a view/raise concerns, you can email your MP (and other elected representatives) here. The Scottish Government is conducting a consultation on the future of social security spending – give your views here.

Writing back in March, the Joseph Rowntree Foundation illustrates how proposed cuts to welfare, along with the lack of priority given to improving living standards, may actually prove counterproductive to any aims of moving people into the workplace, and that other choices can be made. As a society we need (and deserve) more ambitious plans from government to prevent ill health, and create societies that foster inclusion and wellbeing. Pushing disabled people and those with chronic pain and illness into poverty is not the answer – fairer choices are possible.

By Cassandra Macgregor

Cass is a PhD student and physiotherapist.

Email: Cassandra.Macgregor@gcu.ac.uk

Bluesky: @cassmacg.bsky.social