Communication between people, carers and professionals is the key to independent living.
Author: Antoine Tooley
Antoine Tooley, founder of Total Care Manager, speaks from experience about living with and working with those with complex support needs, and how better communication between stakeholders can help.
Most of us don’t think about independence very often. In the case of those with complex support needs, however, there is a constant struggle to preserve personal independence, with limited resources, and often whilst managing a degree of risk.
My own perspective on this comes from the 20 years I’ve spent caring for my brother Tom, who suffered a brain injury in his teens. Since then, I’ve been part of a care team providing 24-hour care at home.
The sector known as ‘complex care’ is a poorly understood and, to some degree, overlooked area of UK adult social care. As a result, people living and working with complex support needs have not had the benefit of certain recent innovations and resources that allow safer, more efficient, and more cost-effective care.
This poses a risk to peoples’ independence in three important ways:
Aside from peoples’ personal independence, the costs of complex care are increasing nationally, putting greater pressure on local authorities to fund support for all those who need it.
It’s therefore vital that we foster better communication and collaboration across the adult social care ecosystem, and help stakeholders align around the value and impact of support being delivered.
These growing challenges, faced by tens of thousands of families like mine across the UK, are the driving force behind my mission to transform complex care.
‘Complex care’ usually implies the support of children or adults with non-age-related conditions such as acquired brain injury, chronic illnesses, or greater needs relating to learning disabilities.
These conditions typically require more extensive support than those encountered in mainstream adult social care.
In the case of physical disability, requirements may skew towards nursing care. In my brother Tom’s case, there are multiple wound sites to manage as he breathes through a stoma, eats via a PEG, and is at heightened risk of infection.
For people with neurodevelopmental conditions, there may be fewer physical conditions to manage, but an increased emphasis on neuropsychology, positive behaviour support (PBS) or education.
With the difference in the nature of conditions, there are two key similarities in how this kind of support is delivered.
Complex care is usually more expensive; where as single dementia patient’s care may cost £7-15k per year, a typical complex care budget would be in the tens of thousands. Some budgets run into the low millions for a single highly-dependent individual.
People in receipt of complex care are amongst the most likely to receive a personal support budget which they manage themselves (or which is managed by someone on their behalf). Of the £10bn complex care industry in the UK, approximately £2bn a year is made up of direct payments, of which about 60% goes to working-age adults.
Personal budgets are particularly valuable in complex care because they give the family and/or support team greater ability to adapt to changing circumstances, and tailor support delivery based on the individual’s personal needs.
Complex care is an incredibly fragmented industry. Whilst some complex care is delivered by mainstream care providers such as care agencies, much of it is delivered by freelance care professionals, ‘microproviders’, paid and unpaid family carers, and other specialist businesses.
This specialists include case management companies, specialist clinical facilities such as rehab units, nursing agencies and supporting living providers.
Together, this diverse and sprawling industry provides expertise, localization, and enable support personalization that isn’t available in the mainstream adult social care sector.
Unfortunately, the unique characteristics of complex care also present unique challenges.
The small size of the industry makes it easy for policymakers to ignore; the £2bn direct payment-funded industry is a relatively tiny portion of the overall £46bn adult social care sector. As a result, people living and working with complex needs are broadly overlooked in policy discussions and are left out of improvement initiatives.
The degree of fragmentation, meanwhile, means that complex care has fallen below the radar of technology companies who might otherwise help to enable positive change. Today, we still encounter large, CQC-registered care providers, which specialise in complex care, which have not yet adopted a digital care record because they’re yet to find a solution that’s up to the task.
Complex care is also, by nature, more difficult to manage. This work can be a heavy responsibility to bear, as this work often has a direct impact on the continued safety and independence of your loved one.
A recent BBC podcast, Complex, documents the everyday the everyday life of a family supporting a young girl called Nora, who has highly complex needs.
Having come from a similar family background, the podcast is an excellent depiction of workload that goes into supporting a disabled person’s day-to-day-life.
Some of the work is life-supporting in nature, with the provision of equipment and support personnel for eating, breathing and addressing conditions.
Some of it is related to quality of life, and adapting the home environment to the supported individual’s need and capabilities.
And some of it is administrative. The work of managing the support may resemble running a small business with many different stakeholders, and in some cases permanent employees – and this workload fluctuates based on evolving support needs.
The work also commonly includes helping to evidence support needs to local care commission groups in order to maintain the personal budget.
Overall, the picture is of a workload that would stretch the skills of a professional organisation, let alone a family member who may have no relevant training or skills.
Across the wider health and social care sector, it is now widely accepted that part of the answer to such challenges lies in software.
Digital care records are now the status quo in hospitals and the majority of domiciliary care agencies and care homes. These systems are used to directly assist in the provision of support, and to improve communication and coordination between the various stakeholders in the support ecosystem. They are also used for evidencing care provision to the Care Quality Commission (CQC) for regulatory purposes, and for funding purposes.
Since 2011, the NHS Assured Suppliers List for Digital Social Care Records (DSCR) has been funding technology adoption of such solutions. The rationale is that if you can digitalize the measurement and management of care, you gain control of the data and become better able to improve care delivery and drive efficiencies. Ultimately, this is supposed to produce a more efficient and effective adult social care sector in Britain.
The objective of this funding was to achieve 80% care tech adoption, based on a proportion of total care providers. This objective has now nearly been reached with just over 70% adoption at the last count – thanks mostly to widespread adoption by mainstream care agencies and care homes.
Complex care is overrepresented in that last 30%, with personal budget holders, local ‘microproviders’ and specialist complex care providers amongst those most likely to still rely on paper notes and Excel.
As a result, the current situation in Britain is one where the support of those with the most complex needs is being handled with the most rudimentary systems.
Nonetheless, a shift is underway. The need to improve management of costs has give rise to prepayment cards (Andor Cards), and software which helps both local authorities and supported individuals manage personal budgets (Alocura, PPL Virtual Wallet).
Alocura is also a rostering tool which can help families with the workload of managing complex care. Some modern rostering systems such as Alpaka are both powerful enough to handle the highly varied shift patterns, characteristic of complex domiciliary care teams, whilst being low-cost enough for domestic usage.
The adoption of such tech is welcome. Each UK local authority spends an average of £33m per year on personal budgets. Clearly, this expenditure should be monitored and controlled so that it can be fairly distribute amongst everyone who needs help.
Equally, there is a clear case for technology which demonstrates how this budget is being spent, helps to maintain safe and effective care delivery, and prove the impact and value of the support.
This would be the natural home of a digital care record solution, however this tech is only penetrating self-directed support at a lacklustre pace, for a range of reasons.
Our ongoing survey, being run in collaboration with National Care Forum, Brainkind, Colligo Labs and Self-Directed Support Network England, reveals the following beliefs amongst personal budget holders and their supporters:
Nearly all respondents, however, expressed positive views about the use, or potential use of technology to aid in their support.
This is important, because communication struggles are causing problems on both sides of the industry.
A common bone of contention is whether support is being funded adequately.
Several times this year, we have heard about an individuals who were forced to re-enter institutional care following cuts to their personal budget – at the cost to that very independence which that budget was intended to preserve.
And every year, people with care or support needs come to harm as a result of ineffective care provision, deriving from incidents such as medication errors or failure to spot early warnings.
Underspent budget is also frequently interpreted by commissioners as evidence of over-funding and may therefore lead to the budget being cut on review; in truth, people with complex needs typically larger budgets, including a larger ‘cushion’ to be able to react to emergencies.
These problems do not derive from ‘penny-pinching’ or because those who fund and regulate the sector are somehow lacking in compassion; far from it.
Rather, they occur because of communication challenges in a highly fragmented ecosystem made up of many stakeholders, and the difficulty of proving the impact and value of the support at the individual level.
Commissioners must rightly seek to control costs and ensure that budgets are spent appropriately. But with the current lack the lack of systematisation, as to how is support is recorded and evidenced, ultimately hinders communication and understanding, and increases the risk of mistakes.
The rise of personal health budgets since the 1990s has been instrumental in enabling greater independence for disabled people.
This should now be followed up with improvement in the tools and resources which help supported people and their families manage, document and evidence the impact of their support.
The DSCR deadline should be continue to be extended past 2025, and the 80% target for technology adoption should be removed, as it sets an artificial cap for what might be considered ‘enough’. 100% may not be achievable, but the focus should be on standardizing the use technology in practically every instance of care and support.
This is not only of personal importance to disabled people, but also of national importance.
Our last two governments have begun push for people to leave hospital sooner, nominally in order to reduce pressure on the NHS. Yet there is no comprehensive plan for how the adult social care sector, which is already under strain, will cope with an increase in very disabled clientele.
Local governments, as well as central government, should help to drive this change. Councils have an obvious interest tools which can allow that funding to be better controlled and distributed with greater precision. Care commissioning groups are uniquely placed to lead this charge.
The support of those with complex needs is uniquely delicate, due to the large size of some budgets, relative to the vulnerability of the individuals receiving support.
Concerningly, the value of that support is almost amongst the hardest to prove, because the means for evidencing that support are amongst the least standardized.
Find out more about Total Care Manager at: https://totalcaremanager.com
Total Care Manager has teamed up with coalition of UK care sector organisations on a study into the penetration of care management software in community care settings.
If you report on daily support activities – whether as a care provider, a personal budget holder or part of somebody’s support network, please take 10 minutes to tell us how you work.
If we can reach 200 responses, we'll have sufficient data to publish a report on the use of technology in self-directed support, and help to influence change.
You can answer the survey here: https://form.jotform.com/242533355400346
The publisher is Citizen Network. Independence for People with Complex Needs © Antoine Tooley 2025.
disability, health & healthcare, Inclusion, Individual Service Funds, Self-Directed Support, social care, England, Article
