Disabled people must have a guaranteed right to travel abroad, MPs and peers have said, as further cases emerged of individuals barred from taking holidays as a result of “ridiculous” rules imposed by local NHS care boards and local councils.
Leading figures have called on the government to bring in clear national guidelines to ensure people who require full-time personal assistants (PAs) are not prevented from using funding for their 24/7 support team for breaks and work trips.
Wide variations in local rules governing foreign travel mean whether a disabled person can take their care team abroad can depend on where they live, the whim of local officials or whether they are prepared to mount a legal challenge.
The call came as it emerged two men with the same health condition and care packages, living 40 miles from each other, are subject to different rules regarding overseas travel with their PA support team.
While Joel, 40, a graduate who works in marketing for a global brand, is barred by his local health board from using his personal health budget to contribute to the travel costs of his PAs when going abroad, David, 25, who lives in a neighbouring health board area, receives a travel costs allocation.
While Joel (not his real name) has been effectively prevented from travelling overseas for the past eight years – he can afford his own travel costs but not those of his two PAs – David was free to take a trip to Europe this summer with his PA support team.
“This is really unfair and brazenly discriminatory,” Joel said. “It is a fundamental human right that individuals with disabilities should have the same freedoms, opportunities and choices to travel as any able-bodied person would.”
Jane Campbell, a leading disability rights campaigner, said: “These ridiculous care restrictions are against common sense. Stipulating where and when the person can use the support they’ve been assessed as needing is like tagging somebody, as if a prisoner out on parole.”
The Guardian previously revealed NHS care boards and local councils were refusing to allow disabled people to use their care funding outside the UK, even when they paid PA travel expenses themselves. Joel’s case suggests other care boards are indirectly barring disabled people from travelling: while overseas travel is in theory allowed, in practice it is unaffordable without NHS funding for PA expenses.
Lady Campbell said: “It’s as if those controlling the purse strings believe disabled people do not deserve the same experiences they enjoy. The government constantly says how important it is for disabled people to work and take responsibility for their lives and yet when we do, these kind of rules are imposed.
“We need national guidelines on using care abroad now to protect disabled people’s rights and end this nonsense once and for all.”
Debbie Abrahams, the chair of the Commons work and pensions select committee, said the restrictions potentially breached the UN convention on the rights of persons with disabilities, which the UK has ratified.
“Disabled people should have the same freedom as everyone else to travel for work, to visit family or simply to go on holiday,” said Abrahams.
Joel, who has spinal muscular atrophy, was initially allowed to use his health budget to pay for his PAs to travel with him and had two short breaks in Europe, at his own cost. Eight years ago, his NHS funder, now Cheshire and Merseyside NHS integrated care board, reversed its decision, ruling travel costs were valid for the UK only.
He challenged the ruling but was rebuffed, being told earlier this year by the care board that the period in 2017 when it permitted him to use his personal care budget for overseas PA travel costs was a “historical error in decision-making”.
Just 40 miles (64km) away David (not his real name) said his local care board made very different rulings. Greater Manchester integrated care partnership blocked his requests for holiday PA expenses for five years. Officials finally relented last year after he submitted detailed evidence suggesting its decision would breach NHS guidance and human rights law.
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It allocated £2,370 annually to enable David to contribute to his PA team’s travel and accommodation costs. David, a graduate with a first-class degree, last year took his first trip abroad without his parents, paid for by himself.
He said: “It can feel like being in a prison for a person with my condition. I want to live how my peers live. I want independence. I want a change of scenery from time to time.”
The MP Marsha de Cordova, who is a former minister for disabled people, said local variations highlighted the urgent need for national guidelines: “Disabled people’s right to travel should not be decided by the mood of local officials.”
Cheshire and Merseyside’s most recent policy, approved last week [10 September] states that while disabled individuals can request holiday travel expenses for their PAs it would “not ordinarily” pay for them. It states it has an obligation to use NHS funds “in a way which is fair and equitable”.
NHS Greater Manchester said it had no ratified policy on holiday travel.
The Department of Health and Social Care’s (DHSC) position is that care boards should examine all requests for PA travel support and consider the health and wellbeing benefits for the applicant of overseas travel for the applicant.
A DHSC spokesperson said: “Personal health budgets work best where people have real flexibility over how they use their budgets and we expect integrated care boards to examine each proposal on a case-by-case basis, in line with national policy and legislation.”
NHS Cheshire and Merseyside and NHS Greater Manchester separately issued the following statement: “While we cannot comment on individual patient cases, all requests for personal health budget funding are assessed according to our personal health budget and integrated budget policy on a case-by-case basis according to patient need. This policy has been developed in line with national NHS guidance.”
