The co-founders of The Filo Project, a social enterprise providing dementia care in East Lancashire, have handed in an open letter at 10 Downing Street calling for an end to an ‘unfair’ rule that adds 20 per cent to dementia care costs faced by local families.

A couple from Rawtenstall, who have first hand experience of dementia, are backing the campaign to remove VAT from care costs for the cruel illness.

An open letter was presented at 10 Downing Street, home of the Prime Minister Rishi Sunak, on Tuesday calling for action.

The Filo Project offers day care within hosts’ homes for small groups of socially isolated older people with early to moderate dementia across eight locations East Lancashire.

Unlike the NHS, dementia care is not free and families must cover all or part of the cost themselves. 

The Filo Project is a not-for-profit organisation, but VAT rules stipulate it must charge families an extra 20 per cent on the vital day care it provides.

This is because it is a community interest company and not a state-regulated institution or charity. 

For families who pay the full cost of dementia care themselves, this additional cost burden of VAT (based on someone attending day care two times weekly) is nearly £2,000 per year (£1,768).

Since the social enterprise was set up in 2014, families supported by The Filo Project have paid more than £700,000 just in VAT for their day care.

Lancashire Telegraph: The Filo Group took fight against ‘unfair dementia tax’ fight to Downing StreetThe Filo Group took fight against ‘unfair dementia tax’ fight to Downing Street (Image: The Filo Project)

Libby Price, co-founder and director of The Filo Project, said: “The Government waives VAT for solar panels and caviar, yet essential dementia care provided by a social enterprise like us is considered a taxable luxury service.

“This is fundamentally unfair and means families can’t afford as much dementia care as they need.

“We’re here today at Downing Street calling for the Government to put this right in the upcoming spring budget by changing VAT rules so not-for-profit organisations like us who provide welfare support and care are exempt from having to charge VAT.

"Families would feel an immediate benefit.”

The campaign is supported by Kathleen Craven with her husband Bill, from Rawtenstall.

Bill has advanced Alzheimer’s disease and fronto-temporal dementia.

The retired teachers got married in 2019 and Bill started experiencing symptoms around a year later but they struggled to get a referral for a diagnosis.

When he was eventually diagnosed his Alzheimer’s was at an advanced stage.

Lancashire Telegraph: The campaign is supported by Kathleen Craven with her husband Bill, from Rawtenstall.The campaign is supported by Kathleen Craven with her husband Bill, from Rawtenstall. (Image: The Filo Project)

Bill has recently started attending a Filo group in Baxenden, joining host Kate and two other men to spend the day together.

They have been sharing photos to encourage conversation, and they will be gardening soon.

Kathleen said: “Bill struggles to recall memories and to get his words out but attending a Filo group really helps with this, as being in the home environment feels more normal and not like an institution.

"With Filo he can feel like part of a family group and do different, stimulating activities.

“We support Filo’s VAT campaign as this rule is an unfair extra charge on people with dementia.

"I receive attendance allowance, and if I didn’t have to pay VAT on top of the care costs we could afford more care across the week.

"It would save me around £90 a month, which would allow more support for Bill and respite for me.”

The Filo Project’s national petition passed its 500 signature target within a week of being opened this month.

It currently stands at more than 1,000 signatures and the social enterprise is calling on the public to show their support by adding their signature at on the website.