South East Cornwall MP Backs Histio UK Rare Cancer Campaign

Most people have never heard of histiocytosis. The MP for South East Cornwall wants to change that, and she has taken the cause all the way to Parliament.

On Wednesday 20th May, Anna Gelderd MP held a roundtable alongside Histio UK in support of the charity’s campaign for better access to histiocytosis treatment. The event brought patients, clinicians and MPs together for a detailed discussion about the differences in treatment for rare cancers, the funding difficulties involved, and the problem of accessing care in rural areas. Patients and parents affected by histiocytosis shared their own experiences.

What is histiocytosis?

Histiocytosis is a group of conditions that occur when abnormal white blood cells, called histiocytes, are created. Histio UK, based in Liskeard in South East Cornwall, raises awareness of the conditions, runs research programmes, and offers support for patients and the parents of patients across all histiocytosis conditions.

Cross-party backing

The roundtable was attended by several MPs who welcomed work to address the issue, including Dr Scott Arthur’s efforts on the Rare Cancers Act and the government’s 10-Year Health Plan.

Anna is calling for more healthcare provision rooted in local communities, and she supports Histio UK’s efforts to spread awareness of the conditions.

Anna Gelderd, Member of Parliament for South East Cornwall, said: “As an MP, I really want to champion local voices, so it was great to invite Histio UK up to Westminster to host this important roundtable.

“It was deeply meaningful to hear first-hand experiences from patients and parents. One of my priorities is to bring healthcare closer to our communities, and part of that means ending the postcode lottery of available treatments.”

📷Professor Matt Colin, patients and parents, Executive Director of Histo UK Lynn Jackson, Anna Gelderd MP, and Professor Stephen O'Brien at the Histio UK event in Parliament (L-R)

The case for faster access

Lynn Jackson, Executive Director at Histio UK, added: “We were very grateful for the opportunity to meet with MPs and introduce a few of our patients, to explain the opportunities to improve access to drugs for rare cancers. New and effective treatments are coming every year, but the current NHS process of approval for ‘specialist’ indications is mired in long administrative delays.

“The team of MPs, led by Anna Gelderd was very receptive to a range of ideas. These include a more holistic approach to evaluating the cost of new drugs that takes into account the fact that earlier treatment with better drugs often reduces the overall burden of healthcare costs. It is also possible to envisage more equitable systems, where drugs already licensed for more common cancers are provided for rare cancer patients – who often have few alternative treatments – while being evaluated for their ‘real world’ benefit within the NHS.

“All of this meets ambitions set out in the Rare Cancer Act and the NHS Cancer Plan. In many instances we just need more rapid and wider access to drugs that already exist. We felt that finally someone was listening to the needs of patients and the evidence provided by experts.”

The roundtable forms part of Anna’s wider work on healthcare in South East Cornwall. She has recently raised parliamentary questions about healthcare access and about the recruitment and retention of dentists in rural areas, spoken about health hub provision in Parliament, and worked with Fowey River Practice and local people on saving health services in Polruan.