Who are we?

Pancreatic Cancer UK is the first national registered charity to work for improvements in the care and support of today's patients as well as those in the future.

We are a national voluntary organization working with medical professionals to identify the needs for improvements in services and information as well as research and we provide a support network for patients and carers as well as a means of raising funds for increased research.

Pancreatic Cancer UK is committed to ensuring increased pancreatic cancer research and improvements in diagnosis, support and information for pancreatic cancer patients and their families. We need to raise funds to support those activities.

We have been lobbying and talking to other organizations such as the National Cancer Research Institute(NCRI), the National Cancer Director, the All Party Parlimentary Group on Cancer and national cancer charities such as Cancer Research UK and CancerBACUP and MPs about the need for increased investment for research and services for pancreatic cancer in the UK and to ensure that pancreatic cancer gets a larger share of resources for cancer in the UK. ( see also information at following links : submission to All Party Parliamentary Group on Cancer(APPGC), Presentation at APPGC "Britain Against Cancer" meeting at Church House, Westminster).

As a registered charity we are establishing our own means of funding peer reviewed research and other projects to ensure better outcomes for pancreatic cancer patients under the guidance of our Medical and Scientific Advisory Board.

The initial trustees have all been affected by pancreatic cancer so understand the problems and issues first hand.

We are not tied to a single hospital or research group.

We also have vital patient representation.

Pancreatic Cancer UK has grown out of a mutual virtual support group which made contact through the Johns Hopkins Pancreatic Cancer Discussion Board.

Many people have been involved since May 2002 when the first members made contact whilst they, friends and/or family lived with and fought pancreatic cancer.

We were inspired by the work of PanCAN and the other pancreatic cancer charities and foundations in the USA and hope that the same level of support for and awareness of pancreatic cancer can be achieved in the UK over the coming years.

This led to the initial core group deciding in November 2002, via the Johns Hopkins discussion board, to take some action and they created this information and support web-site with means of providing donations for research. The web-site was first launched in June 2003 and we have been working with the experts to provide the information available on the web-site. As a charity we will be able to increase our activities.

We want to ensure more and a greater level of funding for clinical treatment of, pallative care for, and research into pancreatic cancer and support for patients and their families in the UK.

Lady Andrea Kennedy, one of the founding trustees, says "I lost my father and a close friend to pancreatic cancer. The warmth of shared experience helps families and friends to cope. Knowing whether others are experiencing similar symptoms or side-effects or what helped them makes the journey easier. It is vital that more people become aware of pancreatic cancer - of the symptoms and the vital need for more research and investment in clinical services."

There is world leading research into pancreatic cancer being undertaken in the UK but it needs to be strengthened by increased funding. There is a vital need for new, more effective treatments and earlier diagnosis. Earlier diagnosis requires more research on screening methods, clearer guidance on symptoms and greater awareness of the disease and symptoms. The government has encouraged consumer (patient, carer, cancer charity) involvement in local, regional and national committees and decisions about cancer research, trials and service provision. In the past has been no (or little) voice for pancreatic cancer patients. We know that anxiety can be reduced by access to information and support. We aim to help pancreatic cancer patients, their families and friends by addressing those needs.

We continue development of the web-site to provide guidance to patients, carers, GPs and also as a central resource of information on pancreatic cancer. We are working with specialists to improve guidance and gain information on management, treatment and support for pancreatic cancer patients. We have been attending professional meetings and talking to the research groups and many of the pancreatic cancer specialists in the UK to find out about the research achievements and needs. We are starting to work with local cancer user groups and networks to provide a voice for pancreatic cancer patients and families. We are also taking part in national meetings on cancer in general and pancreatic cancer specifically. We are raising funds for research.

Sue Ballard, the founder and chair of the directors (ie trustees), says " When my husband was diagnosed with pancreatic cancer at age 48 in 2001 it was a complete shock to us. We knew nothing about the pancreas and certainly not pancreatic cancer. Although inoperable my husband did relatively well, surviving 27months without surgery. At that time there was little information in the UK on pancreatic cancer, where to find the experts and trials and where the research was being undertaken and no national support group or research charity, no-one talked about it especially in the media. I was determined to raise the profile of pancreatic cancer in the UK and to raise funds for research. I had contact with a number of families affected by pancreatic cancer in the UK and we first set-up this web-site to provide a central resource of information. After my husband died we were able to start raising funds for research and other projects of benefit to those affected by pancreatic cancer and the national support group grew culminating in the formal foundation of the charity."

Sue Ballard runs the charity and is also a consumer representative for pancreatic cancer on the NCRI Upper GI Clincal Studies Group and a member of the pancreatic cancer sub-group. This group proposes, designs and oversees national trials on pancreatic, oesophageal, stomach and bile duct cancers. Representation of consumers (ie patients or those with direct experience of cancer) on this committee ensures that their needs and viewpoint is taken into account by the specialists designing the trials. Sue is also currently the charity's representative in the Cancer campaigning Group and Less Common Cancers Working Group. Therefore we need your input to ensure that we remain representative.

The trustees of the charity are:

Sue Ballard	Dr Ian Kemp(GP) MBBS (London l975) MRCP MRCGP DCH DRCOG	Lady Andrea Kennedy

management and administration volunteers include:

Krys Duvall Merchandising and Fundraising support

Les Niewiara Patient representative

Krys Duvall lost her husband to pancreatic cancer at age 44 within a month of diagnosis. Les Niewiara was diagnosed with pancreatic cancer in 2003 at age 43 and has had surgery followed by chemotherapy and then, when his cancer returned in 2007, radiotherapy . He has a very active, busy life and continues to work with a full time career and to run his daughters' football teams.

Development of this web-site and the work of the charity has benefitted from the support and advice of:

• Mr Colin Johnson, Consultant Surgeon, Southampton General Hospital
• Mr Ross Carter, Consultant Surgeon, Glasgow Royal Infirmary and Secretary of Pancreatic Society
• Professor John Neoptolemos, Head of Division of Surgery and Oncology, Royal Liverpool University Hospital
• Professor David Cunningham, Consultant Oncologist, Royal Marsden Hospital
• Professor Nick Lemoine, Director of Cancer Research UK Clinical Centre, St Barts and the London
• Dr Steve Pereira, Consultant Gastroenterologist, University College London Hospital
• Dr Tom Crosby, Consultant Clinical Oncologist, Velindre Cancer Centre, Cardiff, Wales
• Mr Richard Charnley, Consultant Surgeon, Newcastle Royal Infirmary
• Dr Sheela Rao, Research Fellow, Royal Marsden Hospital
• Dr Pippa Corrie, Consultant Medical Oncologist, Addenbrookes Hospital
• Mr Rob Hutchins, Consultant Hepatopancreaticobiliary Surgeon, Royal London Hospital
• Professor Robert Sutton, Divison of Surgery and Oncology, Royal Liverpool University Hospital
• Dr Bill Greenhalf, Divison of Surgery and Oncology, Royal Liverpool University Hospital
• Dr James Gildersleve, Consultant Clinical Oncologist, Royal Berkshire Hospital
• Prof Will Steward, Consultant Medical Oncologist, Leicester Royal Infirmary and Head of the Clinical Department of Oncology at the University of Leicester
• Prof Mike Larvin, Consultant Surgeon, Derby City General Hospital and Wolfson Digestive Disease Centre
• Dr Rob Glynne-Jones, Consultant Clinical Oncologist, Mount Vernon Hospital
• Dr Maeve McKeogh, Palliative Care Consultant, Sue Ryder, Nettlebed
• Dr Harpreet Wasan, Consultant Medical Oncologist, Hammersmith Hospital
• Prof Brian Davidson, Professor of Surgery, Royal Free Hospital
• Mr Satvinder Mudan, Consultant Surgeon, St George's Hospital, Tooting
• Prof Gus Dalgleish, St George's Hospital, Tooting
• Rose Baker, Upper GI Nurse Practitioner, New Cross
• Prof Steve Bown, UCH
• Dr Martyn Caplin, Lead Physician, Royal Free Hospital neuroendocrine tumour group
• Dr Chris Mallinson, Consultant Gastroenterologist, Harley St

We also acknowledge the help and support of:

• Dr Iain McNeish, Consultant Oncologist, Hammersmith Hospital, latterly St Barts and the London
• Catherine, Macmillan nurse
• Sarah, Cancer Information Nurse Manager, Cancer Research UK
• Hanna, Macmillan Cancer Line
• Derryn and Jenny, CancerBACUP
• the officers of the Pancreatic Society
• and many other specialist consultants, researchers, specialist nurses, dieticians, cancer information centres etc around the UK

With especial thanks to :

Philippe Parker and Dominic Latham for registering and arranging hosting of the web-sites www.pancreaticcancer.org.uk and www.pancreaticcanceruk.org.uk