The Second Parliamentary Summit on Rarer Cancers took place on 19 June 2008 at the Houses of Parliament.  It was hosted by Dr Ian Gibson MP, Chair of the All-Party Parliamentary Group on Cancer, and the Rarer Cancers Forum. The Grand Committee Room, Westminister Hall, was packed with 80 people representing thousands of patients. Attendees included patient advocates, patient groups, clinical leaders, parliamentarians, researchers and NHS pressure groups.  Rarer Cancers Forum was disappointed, however, that the Rt Hon Dawn Primarolo MP, Minister of State for Public Health did not attend and did not send any representative from her department. 

Dr Ian Gibson began by welcoming everyone and then RCF Chief Executive, Penny Wilson-Webb, introduced the Summit and emphasised the need for action to bring about improvements in the care of people with rarer cancers.

Patients' experiences: a challenge for the Cancer Reform Strategy

In the first session, four patients with rarer cancers and one carer spoke candidly and movingly about their experiences of care.  Paul O'Byrne focused on diagnosis and then Rochelle Kurt described the difficulties she had in getting access to the right oncologist.  Bill Savage spoke about care in hospital and Sandra Gregory described the problems of obtaining follow-up care.  David Soldinger, who cared for his wife Jay, talked about their experiences of palliative care. The experiences of these five speakers clearly pose very real challenges for the Cancer Reform Strategy.  Professor Jessica Corner, Director of Service Improvement, Macmillan Cancer Support responded and discussion from the floor followed.

Exceptional cases: gaining access to therapies

The second session focused on gaining access to therapies for exceptional cases. Stephen Dallison shared his personal experience of the exceptional cases process and mentioned the moral pressure exerted on him by the PCT - "if you have this treatment someone else will be denied treatment".  A letter was then read out from the daughter of a patient who was refused funding for lenalidomide three times by her PCT. At last her mother was allowed the treatment and since then there has been a remarkable improvement in her condition.  Barrister Peter Telford highlighted the weakness and unfairness of the current system and its shortcomings were further emphasised by Professor John Wagstaff, Director of the Wales Cancer Trials Network. Professor David Cameron, Director of the National Cancer Research Network, responded and there was general discussion from the floor.

Ensuring access to new therapies: NICE and the commissioning process for orphan medicines

This final session began with a contribution by Nick Meade of the Genetic Interest Group.  Next came Kathy Oliver from the International Brain Tumour Alliance.  She suggested that the timescale for NICE appraisal needs to be shorter and she pointed out the value of patients gaining even a few more months of life, perhaps enabling them to go back to work again.  Problems in access to therapies for people with rarer cancers were also discussed by Dr Antonio Pagliuca, haematologist, King's College Hospital.  In response, Professor Rod Griffiths, Chair of the National Commissioning Group, stressed the need to make sure the NHS is run properly  - doing the right things and doing them right.  Professor Sir Michael Rawlins, Chairman of NICE, said that the NHS has a limited pot of money that needs to be distributed as fairly as possible - both clinical effectiveness and cost effectiveness are needed.  He acknowledged that there is a problem: that NICE is not providing timely advice.

Conclusion and summary
Dr Ian Gibson thanked all speakers for their contribution.  He ended the Summit with a robust call for action in the coming year to improve care for people with rarer cancers.

Acknowledgements

The Summit was made possible through an unrestricted grant by Celgene and Bayer Schering Pharma.  Rarer Cancers Forum is very grateful to them for their support.  Rarer Cancers Forum also thanks all the speakers and everyone who supported the Summit by their presence and contributions to the discussion.

Some views of participants

"Thank you for an excellent summit yesterday".

"Thank you so much for the inspiring Second Parliamentary Summit on Rarer Cancers which took place yesterday.
 
Not only was it a very moving and powerful morning - especially the testimonies from the patients - but I think it sent a message out loud and clear about the necessity to raise awareness of the challenges faced by those whose lives are touched by a rarer cancer and also to address some of the substantial problems that exist in terms of access to therapies, exceptional cases and other aspects of the journey".

Report of the Summit

Click here to download the Summit Report for free.