Scotland is about to be overwhelmed by a crisis it has barely bothered to study

Less than 1% of health and social care research spending in Scotland goes to social care. Not a quarter, not a tenth, less than one per cent. The other 99% goes to health: hospital systems, acute medicine, pharmaceuticals and clinical trials. Meanwhile, the part of the system responsible for determining whether disabled people can lead independent lives how and where they choose, for keeping people out of hospital, and for supporting Scotland’s ageing population gets almost nothing by way of research investment.

 

As CEO of Enable and Vice President of the European Association of Service Providers for Persons with Disabilities (EASPD) I have led social care organisations and advised on social care policy for almost two decades. I have seen the impact of that lack of investment in research and the inaction it produces, and I have spent much of that time trying to do something about it. 

 

At Enable, we have transformed how we deliver support, moving to an internationally acclaimed Personal Assistant (PA) model that puts individuals and their rights at the centre.  Delivered via our Enable Cares service, this is in line with Article 19 of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) which affirms that people with disabilities have the right to live independently in the community of their choice.

 

That journey has taught me that better social care and more effective social care are not in tension. They can be the same thing. Scotland has not yet reached that conclusion as a country, and the cost of that delay is mounting.

 

MSPs returned to Holyrood this month and the reform agenda is high on the priority list. Ivan McKee’s appointment as Cabinet Secretary for Public Service Reform, with a brief to deliver prevention over crisis, integrated services and £1 billion of annual corporate cost savings by 2029-30, was the kind of structural commitment to reform that social care has long needed from government. The potentially radical proposals for NHS and local government reform announced in the Programme for Government are a further statement of intent.

 

If this reform programme is to succeed on its own terms, it will need to extend beyond the NHS and central government and fully encompass social care in our communities. It must include NGOs who provide almost a third of social care services across the country. Without that wider ambition of public service reform across all sectors, it will fall well short of addressing the scale of Scotland’s challenge.

 

The Scottish Fiscal Commission projects that health and social care will consume between 55% and 65% of the Scottish budget by the early 2040s, up from around 40% today. The number of people over 75 is expected to grow by roughly a third of a million over the next two decades while the working-age population contracts. A welcome development is the increased longevity for people with intellectual disabilities. This will require more social care and there’s still much to do in closing the life expectancy gap.

 

Every efficiency gain achieved via public service reform will eventually be absorbed by that pressure unless social care changes structurally. That means confronting something Scotland has been reluctant to name directly.

 

We have almost 1,300 social care providers for a population of 5.5 million people. Yet Sweden, which has roughly double Scotland’s population, has significantly fewer social care organisations and achieves some of the highest satisfaction rates from people who access social care anywhere in the world. That is not a coincidence. It is the direct result of a country making a deliberate decision about how to organise a system, investing in scale and coherence, and then building on that structure over time whilst focussing on the rights of the individual. In Scotland, on the other hand, the number of social care providers has grown by 20% over the last 10 years. The sector has expanded in terms of numbers of providers whilst the evidence for reform and different ways of working together across the sector has accumulated.

 

The consequences are entirely predictable. Hundreds of separate organisations, each with their own back office and governance structures, many competing for the same opportunities to serve the same people, many of which won’t have the reserves required for the meaningful implementation of AI. Factor in the need to implement the Real Living Wage as the floor and not the ceiling for the social care workforce if we are to even hope to attract, retain and reward the standard of care workers we would all wish for our loved ones – which must be at the centre of any reform of social care – and the investment is considerable.

 

This is not a criticism of the organisations doing that work, often delivering remarkable care in difficult circumstances. It is an observation about a system that Scotland designed by default rather than by choice and has continued to fund despite acknowledging the benefits of, but not yet implementing, a National Care Service.

 

At Enable, we have taken steps to address this in so far as we can directly. Over the past 12 months, we have integrated three organisations with similar values to our own, where we continue their excellent work, retain their values and serve the same people, without four separate sets of back office costs. That kind of positive consolidation is achievable. It is not painless, and it is not without risk, but it is essential. What it requires is the political will to treat the structure of the social care sector as a legitimate policy question rather than something to be left to individual charity boards to resolve voluntarily.

 

There is also a better model for delivery, and it already exists based on the principles of independent living. Enable’s PA model has been developed and refined over many years to answer precisely the questions the reform agenda is now asking. Individuals shape and control their own outcomes, from developing their service designs to recruiting their own teams of Personal Assistants. Each person has full visibility of their own support budget and control over how it is directed. The Personal Assistant is contracted directly to the person they support, chosen by them. Enable handles the employment arrangements, removing the administrative and legal burden from the individual while preserving genuine choice and control.

 

Enable Cares currently supports more than 1,500 people across Scotland, including those with intellectual or physical disabilities, acquired brain injuries, and mental health support needs. There is no additional cost in supporting people this way and it often produces better results. Many organisations have effective values driven models of care based on independent living, but too many people are still subject to congregated living, out of area placements and care that is far from self-directed.

 

These principles are reinforced by wider European human rights frameworks. While the UK is no longer a member of the European Union, it remains a member of the Council of Europe and a signatory to the European Convention on Human Rights (ECHR). Through the ECHR, the European Social Charter and its support for implementation of the UN Convention on the Rights of Persons with Disabilities, the Council of Europe continues to promote equality, accessibility, non-discrimination, independence and freedom of choice. Central to this approach is the principle that disabled people should be able to participate fully in their communities and exercise control over their own lives.

Scotland now has a unique opportunity to make social care the success story of its reform programme. As the promised three month consultation begins, we must recognise that there are many examples of reform and consolidation internationally from which we can learn. The Sweden comparison shows what is possible when a country thinks clearly and acts accordingly, and there are other examples across Denmark and Japan, while our own Personal Assistant model shows what delivery looks like when it is built around people rather than infrastructure. Both point in the same direction.

The architecture exists and the evidence is clear. We need to change the balance of research in health and social care and apply that knowledge across the private, public and NGO sectors, with no small amount of determination, to tackle one of the country’s most serious and mounting challenges. A fairer and more efficient social care system is within Scotland’s grasp. We are ready, able and willing to help.

 

 

Theresa Shearer FRSE is Chief Executive of Enable, one of Scotland’s largest social care organisations; Vice President of the European Association of Service providers for Persons with Disabilities (EASPD) and Council member of the Royal Society of Edinburgh (RSE), Scotland’s national academy. A Board member of the Glasgow 2026 Commonwealth Games Organising Company, she sits on the advisory boards of the University of Glasgow’s Centre for Public Policy and the Adam Smith Business School