Lucy Robinson is a wheelchair user from Oxfordshire who relies on NHS Continuing Healthcare (CHC) and 24-hour support following a spinal cord injury. Despite leading internationally on disability policy, she has been told her NHS care cannot travel with her outside the UK. Lucy explains how this restriction is affecting her work, independence, and everyday life.
Over the last 12 years living in Oxfordshire, I have received NHS Integrated Care Board (ICB) commissioned Continuing Healthcare (CHC). For the majority of that time, I felt incredibly well supported. I had CHC managers who worked collaboratively with me to enable opportunities and improve both my physical and mental wellbeing.
This included supporting my ambitions to achieve life goals, such as administrative support with training and insurance needed so that a Personal Assistant could safely travel with me to the USA to see the total solar eclipse in 2024, something that would otherwise have been much more difficult.
During periods of poor health, they were always there to support my family and me, increasing medical support where necessary. There was an understanding that maintaining my wellbeing and independence mattered.
However, around a year ago, things began to change.
How Continuing Healthcare is being scaled back
As part of the government’s 10-year health plan, ICBs across England were instructed to significantly reduce their running costs by April 2026, spending no more than £19 per person based on population size. At the same time, many ICBs merged and changed boundaries in an effort to streamline services. In my area, this resulted in the creation of the new Thames Valley ICB, combining Buckinghamshire, Oxfordshire and Berkshire West with East Berkshire, while NHS Frimley ICB was dissolved.
The expectation was that these cost-saving measures would primarily affect administration and management structures, rather than patient care. However, in practice, others and I receiving Continuing Healthcare have experienced significant changes that directly impact our lives.
The first was the removal of my Personal Health Budget (PHB). Personal Health Budgets were introduced to provide disabled people with greater choice and flexibility over how their care is arranged.
Since 2014, individuals eligible for NHS Continuing Healthcare have had a legal right to a PHB, and both the law and NHS policy are clear that these budgets should allow people to meet their individual health and wellbeing needs in flexible and personalised ways. I have since heard similar stories from others receiving CHC in Oxfordshire, suggesting this may be part of a wider shift toward cost-saving measures.
The hidden travel ban facing disabled people
The second change has had an even more profound effect on my life and independence. After the new Thames Valley ICB was established, my care company submitted a risk assessment to support my attendance at an international conference linked to my role as President of the European Spinal Cord Injury Federation. I subsequently received a letter stating that I could not receive my NHS-funded care outside of the UK.
What’s frustrating is that this is not about asking the NHS for extra money. Whether I’m sitting at home in Oxfordshire or attending a conference in Europe, I still need exactly the same care. The organisations inviting me cover travel costs, and I cover any additional expenses myself. The NHS is not funding holidays or flights. I am simply asking to continue receiving the care package I already have.
Without support, I cannot travel and without travel, my world becomes much smaller.
These aren’t luxury trips. This is my work. But this issue goes beyond work. Like anyone else, I want the freedom to travel, spend time with people I love, and experience life outside my immediate surroundings. Most people don’t have to ask permission to leave the country or worry that their support system will disappear the moment they board a plane.
The reality is that disabled people who rely on care are often only as free as the systems around them allow them to be.
The UK signed the UN Convention on the Rights of Persons with Disabilities in 2009, recognising that disabled people should have the same rights and freedoms as everyone else, including those requiring high levels of support. Yet in practice, it can feel very different.
Right now, a formal complaint has been submitted to the ICB because there is no appeals process available. I’m still hoping they will reconsider before the conference in Italy later this month.
Losing independence and flexibility in care
What worries me most is that this may not just affect me. Since speaking publicly, I’ve heard from other disabled people facing similar restrictions and concerns around losing flexibility and independence within Continuing Healthcare, and not just within Thames Valley ICB.
Care should enable disabled people to participate fully in society, not quietly dictate the limits of our lives. For people with high support needs, care is not an optional extra or a lifestyle choice — it is the practical support that makes equality possible. Without it, opportunities disappear instantly. Jobs become inaccessible, travel becomes impossible, relationships become harder to maintain, and the world will gradually become smaller.
What is particularly troubling is that these restrictions are often framed as administrative or procedural decisions, when in reality they have profound human consequences. Support systems can become mechanisms of control, where basic aspects of ordinary life depend on whether a policy permits them.
Disabled people are encouraged to work, contribute and participate fully in society, yet we are often confronted with systems that still assume disabled lives should remain small and unassuming.
What I find hardest about all of this is the feeling that my independence has suddenly become fragile. For years, I built a life around the belief that, with the right support, I could participate fully in the world around me. Now, for the first time in a long time, I feel my world shrinking.
Lucy Robinson’s solicitor reacting to CHC funding concerns
Lucy’s solicitor and Pro Bono Manager at Stewarts, Jodee Mayer, said:
“Thames Valley ICB told Lucy that it needed to be notified of any overseas trip at least six months in advance, which places significant restrictions on her independence as a working professional. However, Lucy was not informed of this requirement until after submitting her request to travel to an international conference, and the application was later refused on the basis that care cannot be supported outside the UK.
“This issue has wider implications for disabled professionals whose work requires travel. The Equality Act 2010 places duties on public bodies to avoid policies that place disabled people at a substantial disadvantage and to consider reasonable adjustments. Where care policies restrict overseas travel, even without additional cost, they may limit disabled people’s ability to work equally, particularly in senior or international roles.”
You can find out more about Lucy Robinson and her disability advocacy work by following her on LinkedIn.
Do you currently receive Continuing Healthcare funding and face challenges such as cuts and restrictions to the quality of your care? Let us know in the comments box, on social media or contact us to share your personal story.