Exeter dementia care campaign steps up pressure on government after Budget

An Exeter-based dementia care provider has joined forces with families and campaigners to urge the Government to scrap a VAT rule they say is driving up the cost of essential day care for people with dementia.

The Filo Project, which runs small, home-based dementia day care groups across Exeter and the South West, supported two retired army doctors who travelled to Westminster on Tuesday to hand-deliver an open letter to Chancellor Rachel Reeves calling for the change. 

The letter, signed by 150 supporters including families in Exeter, raises concerns about a 20 per cent VAT charge applied to dementia day care services delivered by Community Interest Companies (CICs).

Dr Michael Staunton and his wife, Dr Avril Staunton (who was diagnosed with posterior cortical atrophy, a rare form of dementia, at the age of 60) delivered the letter along with Filo Project representatives Libby Price and Dr Liz Dennis, and Tiverton MP Rachel Gilmour.

Dementia day care is not routinely funded by the NHS, meaning many families must cover all or part of the cost themselves. Because The Filo Project operates as a CIC rather than a state-regulated institution or charity, its services are subject to VAT. 

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Families whose relatives attend twice weekly can pay more than £3,000 extra per year in VAT alone. Since the organisation launched in 2014, families have paid around £500,000 in VAT for its services.

Dr Michael Staunton said the impact on families can be severe. “If Avril had a different permanent disability, we wouldn’t have to pay VAT on her care or it would be paid for by the state,” he said. 

“The Filo Project is a lifesaver to me and many other family carers. It’s a lifeline in giving families respite, especially when I am exhausted and Avril’s needs have escalated.”

He added that day care services such as those offered by The Filo Project help delay crisis situations, reducing the likelihood of costly residential care admissions.

Tiverton and Minehead MP Rachel Gilmour, who has previously visited Filo groups, has backed the call for change. She said the VAT rule “in effect creates a two-tier system”, adding that removing VAT would support the growth of community-focused dementia care across the region.

The Filo Project, headquartered on Richmond Road in Exeter, runs dementia day groups in and around the city. The organisation offers what it describes as homely, small-scale day care: paid hosts welcome groups of clients into their own homes for activities and a shared lunch. 

The approach is designed to help people with dementia build confidence, maintain social connections and sometimes delay the need for residential care.

Libby Price, co-director of The Filo Project, said families often face stark financial choices. “For many families it means choosing between their loved one receiving care, and eating or heating,” she said. 

“Removing this VAT wouldn’t cost the Treasury much but would mean the world to families facing dementia.”

She added that dementia is often misunderstood. “The intimate, homely setting means people relax and make friends, while their family carers have a whole day off from caring.”

“Nearly a million people in the UK are living with dementia, and many are still able to enjoy life, contribute to the community and even work. Every day at Filo groups we see how life with dementia can still be a life well-lived.”

Campaigners hope the Chancellor will address the VAT issue in the upcoming Budget later this month.