Ocular Melanoma UK calls for urgent interim access to Chemosaturation as rare cancer patients are left with no treatment options, despite NICE recommending it in April 2021.

Following the Royal College of Radiologists’ recent warning about a “postcode lottery” in cancer care (here), Ocular Melanoma UK (OMUK) is highlighting a similar critical concern. For rare cancers like ocular melanoma, the situation is dire — patients don’t just face postcode variation, there is no NHS access to Chemosaturation. In a rare cancer where few treatment options exist, this limitation has a devastating impact on people’s chances of survival.

Chemosaturation delivers high-dose chemotherapy directly to the liver, targeting tumours in patients with metastatic uveal (ocular) melanoma. It is available at two world-leading centres in the UK — University Hospital Southampton and The Christie, Manchester — yet British patients are unable to receive it on the NHS. Many are left fundraising privately, with each treatment costing upwards of £40,000, it is a route that is understandably out of reach for most.

NICE Has Approved It – But Patients Still Cannot Access It

NICE gave Chemosaturation a positive decision in 2021. Since then, new three-year follow-up data has reinforced its benefits. But funding has not followed, and patients remain locked out of a treatment that could extend their lives.

NHS England created the Innovation and Development Adoption Process (IDAP) to speed up the adoption of new technologies, but Chemosaturation falls outside its scope. As a result, patients are left without a clear route to NHS access.

Despite being available in the UK since 2012, people are still without access to treatment. International patients, including those from EU countries, can receive Chemosaturation in the UK under international agreements — while British patients are excluded.

A Looming Funding Freeze

NHS England has confirmed Chemosaturation is on its 2025 workplan for review. However, the funding freeze announced in May 2024 [NHS England’s May 2024 prioritisation decision] means that, depending on NHS England’s decisions, the treatment may face indefinite delay. It cannot move forward until recurrent funding is identified and, once the freeze lifts, it could be pushed into the backlog of other treatments already waiting.

Patients with aggressive cancers cannot risk being trapped in this bureaucratic logjam. They need urgent intervention by the Secretary of State for Health to unlock access today.

The Human Impact

Jamie Scott, an OMUK member living with ocular melanoma, said:

“When I found out the tumours had spread, I changed jobs to one that gave me more flexibility for treatment, which led me to work for the NHS. They have been an incredibly supportive employer throughout, yet in stark contrast, the treatment I need is still not available to me on the NHS. Ocular melanoma is not a cancer that waits, and the alternative treatments available do not offer the same positive impact. Immunotherapy is not helping enough, which leaves me in the situation I am in now.

I have raised £6,000 towards Chemosaturation, but with a minimum of three treatments costing £40,000 each, the mountain is enormous. This is not a luxury. Without it, I am living on nothing more than hope and a prayer. To those in power, I feel invisible — like just a statistic, not a person whose life is on the line.”

Expert Voices

Dr Neil Pearce, retired Consultant Hepatobiliary Surgeon at University Hospital Southampton, said:

"Chemosaturation is usually a well-tolerated procedure with comparatively short recovery times, giving patients the chance to return quickly to their lives and families.

"It is deeply unfair that patients in the UK cannot access chemosaturation routinely on the NHS. Patients travel from across the globe, yet UK patients are left to self-fund, which is simply not an option for most. The disparity in access is indefensible and urgently needs to be addressed."

Joanne Frye, Chair of Ocular Melanoma UK, said:

“Whilst we are happy to see this treatment having a positive impact on the people we support, no patient should have to fund their treatment when no other option is available. Patients cannot afford to wait years for treatment that could save or extend their lives.

"While we understand the NHS faces budget pressures, the current system is failing patients which is why we are calling for urgent action to be taken by the Government. This situation has a real human cost. Every month without action means more lives at risk.”

Call to Action

While the forthcoming Rare Cancers Bill may help tackle systemic barriers in future, patients living with metastatic uveal (ocular) melanoma need solutions now.

NHS England’s own mission is to “drive the delivery of safe and high-quality care in the right place and at the right time for patients.” Without immediate action, patients will continue to face preventable loss of life.

OMUK is calling for the Secretary of State for Health to intervene immediately so patients can access Chemosaturation without delay. Removing the ‘exceptionality’ barrier from Individual Funding Requests, or allocating interim resources for people whose lives are at risk, would open an immediate pathway. Patients with less survivable cancers cannot be forced to fundraise for life-saving treatment.

ENDS

Notes to Editors

• About Chemosaturation (PHP): Chemosaturation (also known as Percutaneous Hepatic Perfusion, or PHP) delivers high-dose chemotherapy (melphalan) directly to the liver while filtering blood to protect the rest of the body. It is used for patients with ocular (uveal) melanoma whose cancer has spread to the liver. Available in several European countries and the US, it is not routinely available on the NHS.

• Statistics on Ocular Melanoma: Ocular melanoma is the most common primary eye cancer in adults, though still rare, with 650–750 new diagnoses annually in the UK. Around 50% of patients develop metastatic disease, most often in the liver. Once spread, there is no cure, but treatments like Chemosaturation can extend life and improve quality of life.

• About Ocular Melanoma UK: Ocular Melanoma UK is the only UK charity dedicated to supporting people affected by ocular melanoma. Founded in 2009, we provide national support services, information, and advocacy, while working with clinicians and policymakers to improve outcomes. More at: www.omuk.org

• Media Contact:

Alex Harman, Head of Fundraising and Marketing, Ocular Melanoma UK

E: alex@omuk.org | T: 01753 357772

Patient interviews and additional quotes available on request.

• Key Links:

o To read more on Jamie’s story, you can see her fundraising page link here;

https://www.justgiving.com/crowdfunding/jamie-scott-chemosat-treatment

o NHS England’s May 2024 prioritisation decision: https://www.england.nhs.uk/commissioning/spec-services/may-2024-prioritisation-decision

o Royal College of Radiologists BBC Press Release: Postcode lottery for new cancer treatments, doctors warn - BBC News

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