Health, care and disability – crossing the divide

I recently emailed a policy colleague with social care expertise about a project on ‘MLTCs’. ‘What’s that?’ he responded, quizzically. I explained it’s an acronym of multiple long-term conditions, widely used in health policy and that I thought he would be familiar with it. He unscientifically polled other social care colleagues on social media and found a mixed bag – some knew it, some didn’t – and some didn’t think it was a concept that should be used in social care due to its medical connotations. Our conversation got me thinking – is it just semantics or is it representative of a wider disconnect between different sectors?  

So far in my career I’ve been fortunate enough to work across a range of areas – multiple long-term conditions, social care, the disabled people’s movement,  unpaid carers, older people and specific conditions.  

Several of these address overlapping populations. For example, people who draw on social care are disabled¹, and often have multiple long-term conditions. Many disabled people and older people have multiple long-term conditions, but not everyone with multiple long-term conditions is disabled or older, and not every disabled or older person draws on social care. And carers may fall into any of these groups, as well as supporting people in them.

And significant numbers of the population are in these groups. Between 20-40% of the population live with multiple long-term conditions, rising to over half of people aged 65 and upwards. Around one fifth of the UK population is disabled – including more than half of people aged 85-89. Eight percent are carers, and while only a relatively small proportion of the population draws on social care, a larger number are in need of it.   

Regardless of which groups people fall into or identify with, all of these populations will include people facing shared challenges in a context where disability benefits are likely to be cut for future claimants, health services largely remain organised around single conditions and social care reform is still a distant prospect. 

People from these groups also often share common aims: 

• getting the services they need 

• being treated in a holistic, dignified way 

• being able to live a life meaningful to them, with the best health and wellbeing they can achieve. 

So why do they often seem to be disconnected from each other? I've witnessed a lack of understanding of social care among those working on MLTCs. Disabled people’s organisations are not always seen as key stakeholders in social care and don’t always enter conversations about health care. There are disconnects between disabled people’s and older people’s groups and between all of these and carers’ organisations. 

But I can see many opportunities for mutual learning too. Disabled people’s organisations have a lot of expertise to share about disabled people leading or being meaningfully involved in work that impacts their lives – but they often avoid talking about health services. One reason is limited resources, especially when there are so many other societal barriers to address. Another is concern about framing disability in medical terms, which can feel at odds with the social model of disability.  

However, working with professionals from MLTC and social care fields could enable a more nuanced and useful discussion about health and disability. Professionals in these fields can also benefit from social model insights from disabled people’s organisations – helping to develop a holistic view of what’s possible for people with MLTCs or who draw on social care.  

While there are some good examples of including people with lived experience in MLTC and social care focused work, there is still a way to go before that work is routinely led by disabled people or those with MLTCs. Finally, disabled people’s, older people’s and carer’s organisations often address similar issues and could benefit from greater crossover. Sharing resources – in particular funding – across these groups could enable them to do more work on joint issues together. 

So what difference could this all make? I see it as each sector holding part of the puzzle. Imagine the power of a movement that understands different models of disability, care and ageing and the importance of lived experience leadership and meaningful involvement. A movement that has the technical experience and skills to improve delivery of social care and the clinical and research skills to develop diverse interventions that enable better access to and experience of health care. A movement run by and for the people it advocates on behalf of, fully integrating lived experiences and professional expertise. That’s something I want to be part of.  

I’m sure what I’ve witnessed is only part of the story and I’d love to hear about places where these topics have already been successfully integrated. If you have examples to share, please comment below or drop me an email – I’d love to hear from you.