People who once had a slim chance of surviving childhood will add to care crisis | Amelia Hill

The health and social care system is not only struggling to meet the care needs of our ageing population, it is completely unprepared for the consequences of looking after growing numbers of older people with extremely complex health problems. That’s the conclusion of Karen Lowton, a professor of sociology at the University of Sussex who specialises in ageing and health.

Whereas 40 years ago a child born with cystic fibrosis, severe congenital heart defect or Down’s syndrome had a slim chance of surviving childhood, let alone reaching adulthood, now there are more adults than children living with these conditions. In addition, people with HIV are also growing older. This is a “remarkable testament” to advances in medicine, says 49-year-old Lowton. But she warns that these success stories are set to create another crisis for an already stretched social care system, as this diverse group of people’s care needs increase with age.

“As these individuals grow older they will experience even more health problems,” she says. “And because no one has reached old age with these conditions before, many of the health and psychological problems they will face are impossible to predict or prepare for.”

Although the Cystic Fibrosis Trust has a national database of UK patients, there are hardly any other national patient registers for these groups. This means it is difficult to know exactly how many people will require lifetime specialist care and exactly what care they will need.

What is certain, adds Lowton, is that even more people will require in-patient and outpatient care from specialist health services as survival ages increase, not only for physical but also mental health; depression and anxiety are common features of these conditions for adults. “Although clinicians are broadly aware of the challenges to come, none of the clinical services are prepared for the increase in demand and increasing complexity that these now-adult conditions will bring.”

A 40-year-old with cystic fibrosis will need to spend additional time taking more medicines and treatments not only for their cystic fibrosis but also for the health conditions that arise from it such as osteoporosis and cystic fibrosis-related diabetes. They may require a lung transplant as their disease progresses.

An adult with a severe congenital heart defect is likely to experience complications such as arrhythmias and heart failure.

An older adult with Down’s syndrome will need to have a plan for their future as their parents age and become less able to support them. Those living in supported accommodation are likely to need increased support from social services as they grow older, which may involve a move into a care home. And they have a higher risk of Alzheimer’s disease and of developing symptoms at an earlier age.

A person growing older with HIV may experience longer-term side effects from their medication, as well as symptoms of chronic illness at a younger age than the general population. Many older HIV-positive people live alone with little family support and few financial resources.

“I think the key difficulty for providing proper health services for these ‘new’ ageing populations in adulthood is that our definition of success in this context is so focused on the short-term,” says Lowton. “The current crisis in the NHS reflects our concerns about patients’ immediate care needs rather than considering what our health and social care services will also require in the future in order to care for patients.

“We are unwilling or, perhaps, incapable – due to our parliamentary cycles and the current government’s ethos of austerity – of looking ahead to see what type of support, intervention and care these ‘new’ ageing populations will need, and how we, as a society, can provide it.”

Lowton says there is little recognition at the Department of Health of their long-term medical and social wellbeing. “The £22bn hole in the NHS’s finances doesn’t bode well for these ‘new’ ageing populations with their expensive-to-treat, lifelong conditions,” she says.

It’s impossible to say how much these conditions could add to the social care bill, because we don’t yet have a good idea of exactly how many ‘new’ ageing populations there are growing older, Lowton explains.

“We also don’t know how health in later life will be experienced, although it is likely that people will experience even more complex conditions as they grow older. Whatever the cost, these populations will be a substantial addition to the current health and social care bill,” she adds.

So what should be done? Lowton cites a number of ways to help to mitigate some of the issues, including ongoing and regular clinical oversight, more support for mental health, more resources for specialist adult clinics, more knowledge and skills training for carers, and more support for families who help to care for these adults.

“The need for care in adult life is a problem that most professionals working in the health and social care fields acknowledge, although to date there has been little development of innovative care solutions for these ageing groups,” she says.

“Worryingly, these groups are now being pitted against each other when funding for new treatments is considered.” For example, NHS England’s response to the judicial ruling that it should fund pre-exposure prophylaxis (PrEP) for people at risk of HIV was that it would be at the expense of funding other treatments such as ivacaftor, a novel personalised medicine for children with cystic fibrosis.

What we must not do, says Lowton, is to lay the problem of increasing care costs at the feet of the people who experience these types of conditions or to think that meeting their care needs is utopian. “Life is tough enough for them as it is,” she says. “As a society we need to appreciate that the significant resources we invest in these ‘new’ ageing populations at the beginning of their lives need to be sustained throughout adult life and into old age.

“We do need to support the scientists who focus on finding a cure, but we also need to support all these adults for whom a cure will come too late.”

Curriculum vitae

Age: 49.

Family: Two grown up sons.

Lives: Orpington, Kent.

Education: Newstead Wood School, Orpington; King’s College Hospital, registered nurse training; Kingston University, IBSc (Hons) health studies; St George’s Hospital Medical School, MSc health sciences; Royal Holloway (University of London) PhD in medical sociology.

Career: 2015-present: professor of sociology (ageing and health), University of Sussex; 2006-14: senior lecturer, Institute of Gerontology, King’s College London; 2003-06: lecturer, Florence Nightingale School of Nursing & Midwifery, King’s College London; 2001-03: research fellow, King’s College London and St Christopher’s Hospice, Sydenham; 1996-2000: doctoral student, Royal Holloway (University of London); 1994-96: research sister, St George’s Hospital Medical School, London; 1989-94: staff nurse positions in intensive care units at St Thomas’ Hospital, London (1991–94); Royal Surrey County Hospital, Guildford (1990–91); Royal London Hospital (1989–90).

Public life: committee member, European Society for Health and Medical Sociology.

Interests: Spinning, climbing, theatre, literature.

People who once had a slim chance of surviving childhood will add to care crisis | Amelia Hill