‘I want to live’: the disabled people unable to go abroad because of care funding refusal

Campaigners say care users face a postcode lottery for support overseas – despite no extra cost to taxpayer

Disabled people are being blocked from travelling abroad by NHS care boards and local councils that refuse to let them use their care funding outside the UK, the Guardian has learned.

Campaigners warn of a “postcode lottery” in England where the right of a disabled person to travel overseas depends on where they live or the whim of local officials – even when there is no extra cost to the taxpayer.

Disabled care users report having to abandon travel plans at the last minute, or go for years without a break, when authorities refuse to pay for their care abroad, even though they have agreed to meet all the travel expenses.

The Guardian is aware of instances where individuals have had requests for care and support for overseas travel turned down by NHS officials – only to have the decision reversed when they threatened legal action.

Lucy Robinson, 38, told the Guardian she had been prevented from attending international work events and going on a holiday because health officials in Oxfordshire had refused to allow her to use her care package abroad.

Robinson, who is quadriplegic and has a team of 24-hour personal assistants, is often required to travel in her role as the president of the European Spinal Cord Injury Federation. She has received NHS support for some trips.

She said the experience had caused huge stress: “Travel is one of the things that defines my life, in terms of most of the work I do, but also because I like travelling. My quality of life is based around that. I want to live, not just to exist.”

The cases have led to calls for national guidance amid concerns there are no clear or consistent NHS or council-wide rules clarifying the right of disabled people to take their carers abroad. Their care packages typically provide them with personal assistants for help with dressing, movement and night support.

Campaigners have emphasised this is not about “holidays on the NHS”. There is no extra cost for the health service or local authorities, which are already paying for the care. In almost all cases, the care recipient is expected to pay for their assistant’s expenses and arrange their insurance.

“Refusing to pay for care and support abroad does not deliver any financial savings for the taxpayer,” said Carol Barraclough, the advocacy and support manager at the Spinal Injuries Association. “We’d like to see national guidance on this that is effective and clear on the rights of all disabled people to take their carers outside the UK.”

Robinson said the Thames Valley NHS integrated care board (ICB) told her in April it had rejected her care request to attend a conference in Germany because “NHS funding responsibilities cease at the UK border”.

As a result, she was forced to abandon planned work events in Norway and Albania. She was able to go to Germany only because her 69-year-old mother stepped in as her 24/7 carer.

The care board made a rapid U-turn in June when Robinson threatened the health board with legal action, arguing it was acting unlawfully.