Breakout session 4: Rarer cancers

Over half of cancer deaths (53%) are caused by rare and less common cancers yet there is inequitable access to care and support for people suffering with them.

The Government and Opposition parties are currently focussing on public health and prevention, but there is a misconception that all cancers can be avoided through prevention, screening and healthy lifestyle programmes and this is not the case for many rare and less common cancers. 

Over the next four years the NHS are likely to make savings of approximately £2.9bn from the expiry of patent drugs becoming generic however as cancer budgets are not ring fenced it is unlikely that these huge savings will be made available to fund cancer treatments.

Speakers

• Andrew Wilson Webb - Chief Executive Rarer Cancers Forum (chair)
• Adrienne Morgan - Secretariat , Cancer52 (co-chair)
•  Philippa Carr - Head of Education and Advocacy, Target Ovarian Cancer
• Kathy Oliver - Co Director, International Brain Tumour Alliance

View Philippa Carr's presentation [PDF, 294kb] |

View Kathy Oliver's presentation [PDF, 244kb] |

Challenges

• Rare and less common cancer treatments are difficult to access because they are expensive and often judged 'not cost effective enough' by NICE.
• Government funding of research for most rare and less common cancers is not sufficient.
• Not enough patients with rare and less common cancers have access to Clinical Nurse Specialists.
• Emotional support for people with rare and less common cancers is lacking.
• Better supportive information for patients is needed.
• Better access to multi-disciplinary teams and centres of excellence is crucial.

Conclusions

Top three ideas for reducing cancer inequalities:

• Access to treatments for rare and less common cancers needs to be improved. In particular, NICE needs to take a more flexible approach to the appraisal of therapies for rare and less common cancers; be more transparent; take into account social values; and speed up delays between EMEA approval and NICE appraisal.
• There should be greater recognition of the specialist needs of rare and less common cancer patients and a commitment by Government and regulatory agencies to understanding the uneven playing field for rarer cancers in current provisions in a range of services including clinical nurse specialists, multi-disciplinary teams and centres of excellence.
• Early diagnosis of rare and less common cancers must be improved.   The Government should introduce a 'three strikes policy', i.e. when a patient presents with the same unresolved symptom/s three times they are automatically referred for further testing. 

Breakout session five: Survivorship

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