The NHS is relying more on charities - and that might be creating problems for patients

The distress of the man on the other end of the video call was clear to dementia specialist nurse Louise Burns. He was struggling to get his elderly mum, who had the condition, out of hospital - she needed support to move into her home.

Burns was able to put him at ease. She is part of a team running virtual clinics that support more than 100 patients and family members a week: "No matter what stage they are at, we try to help," she says. She explained the discharge process and where to go for help. The man's mother was soon back where she wanted to be.

Traditionally, a service like this would have been run by the National Health Service – but the clinic, which was set up during Covid and continued because of strong demand, is entirely funded by the charity Dementia UK.

The charity's chief nursing officer Paul Edwards says it is "trying to fill the gaps" within stretched NHS services. Burns adds: "The NHS and social care are under such huge pressure and dementia cases are rising - it's not always easy to get the support you need."

Dementia UK is just one of many charities working in the health sphere. From children's care to mental health and cancer services, charities are playing an increasingly important role in caring for patients.

Some - largely in England - have formal NHS contracts, while others work side-by-side with the health service across the UK, trying to provide additional support to patients in a way the NHS cannot.

A desire from governments of different parties from the 1990s onwards to develop a market of providers – NHS, private and voluntary sector – has meant the charity sector is now big business in health.

It's estimated that cancer charities alone raise more than £1bn a year, and the NHS in England spends nearly £2bn a year buying services from the not-for-profit and voluntary sector.

But there are concerns about the scale of charities' involvement in delivering frontline services - including from within the voluntary sector itself. Those directly providing services say they are having to subsidise squeezed NHS budgets.

And despite the good intentions of the charitable sector, some critics say its work with the NHS means more money ends up in wealthier communities. Defenders of charities' involvement, however, say much-needed funding should be welcomed.

So is the growing role of charities a symptom of a health service at breaking point - or a positive way of involving the public in their health care? And what are the risks?

Back to the time before Bevan?

There's nothing new about UK health charities taking on a major role in delivering services. Prior to 1948, British healthcare was provided through a patchwork of local charities, voluntary organisations, local authorities and private arrangements. Many hospitals depended on charitable donations, subscriptions and fundraising events to survive.

The creation of the NHS transformed this model. Most hospitals were brought into public ownership and funded through taxation. NHS founder Aneurin Bevan believed healthcare should not depend on charity, and restrictions were placed on NHS hospital charities actively raising money. But they did not disappear completely - they could still receive gifts and donations.

A major shift came with the Health Services Act 1980, which encouraged a more active fundraising culture. From then on, NHS charities expanded significantly and became increasingly professionalised. By the 1990s and beyond, they were raising substantial sums for equipment, buildings, research, and the likes of play areas in children's wards and well-equipped staff rooms.

Today, distinct from charities devoted to particular diseases or conditions, there are now more than 220 NHS charities attached to hospitals or community services, which raise £620m a year.

Ellie Orton, chief executive of NHS Charities Together, which represents them, says that while this sum may sound high, it represents only around 0.3% of the health budget.

She says the very purpose of the charities is to provide support, equipment and services that are additional to what the NHS provides. Recent schemes involve things like CPR training for members of the public, defibrillators being placed in community venues and green spaces in hospitals.

But it is a fine line. Scanners, blood transfusion equipment and emergency department co-ordinators have also been funded by charities. Some would say say core NHS functions like these are exactly what we pay our taxes for.

Orton defends this. "It's just the way it is now. We shouldn't get too ideological about this. It's not helpful to think the state can do everything. Yes we pay taxes but that has to cover lots – and it's finite. If our fund-raising means a parent of an ill child can stay close to their child while they are in hospital in a room funded by a charity, why not?"

And she says her discussions with the government suggest that there is increasing interest in what charities can raise and also what larger philanthropic donations by individuals or organisations can achieve.

In recent years, huge one-off sums have been raised. During the pandemic, the NHS Charities Together Covid appeal resulted in a £10m donation by the trading firm XTX Markets, while the Rausing family - best known for founding the food packaging giant Tetra Pak – gave £5m.

Rugby league legend Sir Kevin Sinfield's fundraising in support of his friend Rob Burrow helped bring in £6.8m for a specialist motor neurone disease centre at Leeds Teaching Hospitals.

"Of course, we are not talking about going back to a pre-1948 situation, but there is real interest in what such philanthropy can do," says Orton.

But there are inequalities. The NHS charity sector is dominated by some of the big London hospitals and specialist cancer and children's centres. The Royal Marsden and Great Ormond Street charities between them are responsible for nearly a sixth of the investment made by NHS charities.

"This does concern us," admits Orton. "It's not always a level playing field, but the answer to that is to help the NHS charities that don't raise as much to raise more."

The squeeze on charities

The legislation change in the 1980s, coupled with the market reforms of the 1990s, also helped pave the way for specialist disease-specific charities such as Macmillan, Marie Curie and Dementia UK to get involved in the delivery of NHS services.

For example, over the past three decades, Dementia UK has developed a well-established network of specialist dementia nurses known as Admiral Nurses, who work in a range of hospital and community settings. The model is based on the charity co-funding posts with the NHS for up to two years with the expectation that the NHS will then take on the funding.

But with demand increasing, Edwards says it is becoming a "struggle" to get the funding needed from the NHS or from donations. "We are being asked to fund them for longer or find more than half the cost," he says. "Services are really being cut back."

And it is not just in dementia care that charities are noticing a squeeze. The charity WellChild has helped establish a network of 54 specialist nurses who work with very sick children. It funds these posts for the first three years, before responsibility for funding is expected to transfer to the NHS.

But disappointingly for the charity, for the first time this year a nurse post was not kept on, says Amy Mitchell, WellChild's director of programmes. What's more, WellChild's nurses are only meant to carry a caseloads of 15, but the average is currently 40. "Services are being dismantled - and our nurses are propping things up," Mitchell adds.

Others in the voluntary sector agree. Charities are increasingly being asked to do more with less, says Mark Yates, chief operating officer of Rethink Mental Illness, "and there is too often an expectation that we will absorb shortfalls ourselves to keep essential services running".

Parkinson's UK told the BBC its funding has helped the NHS pay for around 70% of the specialist nurses working in the field - and its chief executive officer Caroline Rassell says it's unfair on people affected by the disease.

"Charities having to fund these posts is effectively an additional 'tax' on people with Parkinson's as they are our main donors," says Rassell. "Nursing care should be the cornerstone of what the NHS offers."

Falling short of demand

Polling by the National Council for Voluntary Organisations shows 71% of health charities say the value of their contracts are not enough to meet the demand for the services they provide with many using their own donations to keep them going.

The survey dates back to 2023, but the NCVO says there is nothing to suggest the situation has eased.

NCVO chief influencing officer Leigh Brimicombe says it's quite clear charities are having to "subsidise" the NHS and wider public services and the government needs to address it by offering contracts that "cover the full cost of delivery".

"Otherwise, we run the risk of services being reduced or cut completely, at a time that communities in need are relying on them most."

For its part, the NHS is adamant that charities remain a valuable partner. NHS England points out that while the value of contracts to the voluntary sector in terms of proportion of the budget has dropped, it has still risen in cash terms.

In a statement, NHS England told the BBC the current 10-year plan looks to build on the "potential" of these partnerships and given the sector a "stronger voice" in health and care.

Driving inequality?

It's a complex relationship, believes Helen Gilburt, of the King's Fund think tank. Charities bring "real benefits" through their expertise and close ties to communities, she says, and there is "an element of subsidising" as the NHS seeks savings. But the situation has also "created inequalities" in the funding and support available for different diseases, she believes.

For instance, some areas, like cancer, have an established charitable sector "which is able to attract large amounts of funding", she says. These charities have been able to advocate for their patients, work with the NHS to enhance specialist services, and use their funds to develop services of their own.

Then, she says, there are charities in some sectors - "Parkinson's and dementia are good examples" – which are investing their own funds to develop specialist roles. "But they would argue this does not go far enough to meet the needs of people they serve.

"Then there are other areas, like sickle cell disease for example, where the charity sector is small and has even less funding."

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Inequalities exist within sectors, too, say experts. Take hospices, for instance. "The fact remains that some communities will be able to give more than others, leading to inequalities in hospice provision," says Toby Porter, chief executive officer of Hospice UK.

And as a result, says Sarah Scobie, deputy director of research at the Nuffield Trust think tank, "more people from deprived areas die in the place where most people say they don't want to die – in hospital".

Not all of these differences can be explained by fundraising capacity. Health literacy – people's ability to navigate services and advocate for themselves – can also affect access to support, she says.

But her concern is clear – the scale of charity involvement in the NHS can widen inequalities.

As Orton points out, the UK is not returning to the pre-NHS era, when healthcare depended on charitable giving. Yet charities are no longer operating on the margins of the system, either.

Top picture: Getty Images

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