These Blogs were originally published online by the Roy Castle Foundation.
Monday 14th September 2009.
It is now a week almost since I submitted my first blog, but in that period, cancer and its associated problems have taken up much of my time. I have attended two meetings, a training course and one conference.
The first meeting took place in Sheffield on Monday at the NHS Offices in Don Valley House. It was a meeting of the North Trent Cancer Network Patient Partnership Group, which co-ordinates the work of the patient groups in North Trent. North Trent is a district which combines the metropolitan county district of South Yorkshire and parts of North Lincolnshire and North Derbyshire, including the towns of Barnsley, Chesterfield, Doncaster and Rotherham, and the city of Sheffield. This area has a population of about 1.5 million people. There are thirty cancer networks in England, all of similar population but of differing geographical area. There are user groups in each of the five urban areas which monitor and comment on the cancer services provided by their local hospital. “User” is one of the many words which refer to patients and carers, as well as to healthy members of the population. In the research world we are called consumers. What do you think of these names? They are viewed as insulting by some people. They don’t really worry me. What’s in a name? More and more these days we are called “patients and the public”.
Monitoring services is really just one of the many functions of the patient partnership. They can be asked opinions on almost everything about a cancer journey, all the way from car parking at the hospitals to how people feel about their radiotherapy treatments. I have been acting as vice-chair of this group now for almost two years. The real vice chair has been ill. I found out today that I will soon be the actual vice-chair. Another job for my CV. For all sorts of reasons, I cannot decline this post. It is difficult to find people to get involved in these groups, and I will stay on until numbers are healthier. Finding new volunteers is a major project. We are trying to hold an event to find new recruits. If you fancy getting involved in these groups you need to contact your cancer network. People with experience of lung cancer must feed back their views about the illness and its treatments. Please help if you can. More later!
Tuesday 15th September 2009
I wasted some time in my garden.
Wednesday 16th September 2009
On Wednesday I went to Sheffield Royal Hallamshire Hospital to meet with Professor Sam Ahmedzai, a palliative care consultant and researcher at Sheffield University, and Doctor Jon Wadsley who is the lead clinician of the North Trent Cancer Research Network. The meeting was held to discuss the funding for the Consumer Research Panel. Every year we have this debate. The panel consists of thirty patients and carers, who meet four times a year to discuss and debate research issues. The panel is about nine years old, and I’ve been a member for six years, and for the past two years I’ve been the chair. I passionately believe in the work that this panel and others like it are involved in. We offer the patient viewpoint about research issues in local studies, usually being hosted by the University of Sheffield, or Hallam University, but our fame has spread and we have recently responded to requests for help from as far afield as Glasgow, Cardiff and Cambridge, to name but a few. As I blog my way through the coming months I will try to describe some of our meetings and projects.
I wasted another couple of hours on Wednesday afternoon on a course. A golf course!
Thursday 17th September 2009
On Thursday morning I was out of bed early to catch a train to the capital to attend two meetings.
The first was a meeting of the NCRI Consumer Involvement Steering Group (CISG), chaired by Derek Stewart. Derek is a head and neck patient, who has used his great voice in recent years to further the involvement of patients and carers in Health Research. He was the first chair of the NCRI Consumer Liaison Group, and now works for the National Institute for Health Research in Leeds. The CISG is a group of patients, carers and health professionals who oversee and advise involvement in the UK. My great friend Tom Haswell attends the meetings and travels from Glasgow to do so. He is a long term survivor of lung cancer who has campaigned and fundraised for Roy Castle for many years. I look forward to meeting him again in his home town for the Roy Castle meeting. At the CISG we debated many topics including the appointment of a new Associate Director for patient involvement, how to tease out the impact of patients in the research world, the role of and support needed by local consumer research panels, etc. The meeting was held at the Medical Research Council headquarters on Park Crescent near Regents Park.
The second meeting was a conference at the Wellcome Foundation on Euston Road about the National Cancer Informatics Initiative, and their American counterpart CaBIG. These groups are building intelligent systems to connect the many different cancer databases, and therefore give better access to these many data sources for accredited research professionals. This will lead to better, more joined up information for researchers and clinicians, and is a brilliant example of the excellent uses that all of this modern technology can be put to. One of the keynote speakers at the conference was Professor Sir Alex Markham. Look him up on Wikipedia! He spoke with some dismay about the way that the NHS data systems are maligned by the media. It can be seriously demoralising for NHS staff to read the articles in the popular press and listen to the Newsnight reviews which bash the systems which are being put in place. The reality is that these initiatives are doing some fantastic work which will lead to real benefits for cancer patients. These systems do occasionally attract criticisms from some patient groups who worry about the confidentiality of their records and the consent that patients would need to give for these records to be used. The community of patients in the research arena are almost totally in favour of this kind of work and feel that patients who are treated by the NHS have a responsibility to allow their records to be used when suitably anonymised for the general public good, and indeed some patients insist that their records are used in this way to help future generations of patients. In a recent survey of almost two million patients, only about 800 raised any kind of objections to this kind of work. I make that less than half of one percent. I am totally committed to the work of these groups, and they have my wholehearted support. My father would not hesitate to offer his records if they were to be used for the general good, and I’m sure you would all support that.
It was a two day conference, and I stayed overnight at the Novotel on Euston Road. I was also invited to the conference dinner at the St. Pancras Grand Restaurant. Very posh. Very good. Great company. I sat with Dr. Rob Merriel from Melbourne, who had spoken earlier in the day about databases in Australia, and how clinicians there routinely collected treatment data from all people using their Health Service, and how this information can be used to inform research into better health. I will tell you more of the story in Australia later, as I intend to e-mail Rob with some questions about the Quartz lung cancer trial.
Friday 18th September 2009
There are two members of the patient community on the Board of NCII and they are intimately involved in the work of the initiative. John Rouse and Julie Clifton are to be thanked for this work. I was invited to address the conference on the Friday afternoon and spoke about the co-ordination of patient groups in the cancer research world, both in local groups and on national committees. I would like to thank NCII for this opportunity. My knees have nearly stopped shaking. A meal at St. Pancras station underneath the stately arches of the old station, and then a train home. I have really enjoyed the week.
Sunday 20th September 2009
And then back to London on Sunday evening, staying at a hotel on Sloane Street overnight.
Monday 21st September 2009
Walking to The Royal Marsden Hospital to attend a course on Innovations in Cancer Research. It was a great pleasure to bump in to Monica Jefford again at this meeting. I had not realised she was registered until I checked in. Monica is a fully fledged member of the NCRI Consumer Group, and is also the chair of a consumer research panel in the South West London Cancer Research Network, based at the Royal Marsden in Sutton.
These one day courses are excellent if the brief fits your needs and I can heartily recommend that you use them to keep abreast of advances. This is the third such study day I have been to, the other two addressing issues around Lung Cancer, and Radiotherapy. Today I heard presentations about a trial for treating bone metastases with radium-223, the trials and tribulations of a career as a research nurse, trials in prostate specific radiotherapy, advances in research into palliative care, and a trial which looked at the possibility of monitoring chemotherapy patients using a handheld data organiser. Tube train from South Kensington to Kings Cross and then National Express back to Yorkshire. I’ve got a day off tomorrow!
There is still some information online about NCII at
You can read more about CaBIG at
Wednesday 16th September 2009
I have been in London again today at the Royal College of Physicians, a major conference centre near Regent’s Park for a meeting of two data audit groups. The National Lung Cancer Audit, formerly known as LUCADA, has been collecting treatment data for many years about the treatment of lung cancer patients in English hospitals. From a low base of engagement in the early years, now every hospital trust in the country has submitted data at some time or other. Typical data collected would include the age at diagnosis, type of lung cancer, the stage of the disease, the performance status of the patient, whether or not the patient was discussed by a multi-disciplinary team, or seen by a lung cancer specialist nurse, what type of treatment the patient receives, including surgery, radiotherapy, chemotherapy and palliative care, etc. The data is collected to help trusts to analyse their own services, in the hope that any need for improvement can be recognised and implemented. This is a gross simplification of the process, but I hope you get the idea. At the meeting I sat next to Jesme Fox. (read her blogs!). Jesme has worked on the data audit for many years, and is an expert on its methods and the benefits it can yield for lung cancer patients. It is an honour to work alongside her. The Roy Castle Foundation is very fortunate to have her as an advocate.
The world of cancer research and data audit is changing daily, but it would be a crying shame if the work of the audit was to come to a close. It is unlikely that this will happen in the very near future, but we must be vigilant to ensure that it doesn’t happen until all of the problems it is tackling are solved. I look forward to the day when every hospital trust submits data to every annual cancer audit, and that that data is of high quality and is complete in all fields. These audits are a massive force for good. The lung audit will help to ensure that every lung patient receives the best possible treatment, and is helped and supported by a specialist nurse. At the moment approximately only three in five patients get this specialist help, or at least that’s what we think happens. Until we can be sure that all hospitals are submitting complete data we cannot be sure. When you attend your hospital meetings, it would be good if you were to ask about nursing provision. The lung cancer nurse specialists at our hospital were excellent in the support they gave to my father during his illness. They were always the first port of call when he needed help. The audit will also help us to understand the benefits of early diagnosis and surgery in the treatment of the disease. Mick Peake, a cancer specialist from Leicester, chairs these meetings, and has been a force for good in the lung cancer world for many years. Mick also chairs the NCIN meetings.
In the afternoon, a very similar group of people met for the National Cancer Intelligence Network Lung Cancer Site-Specific Clinical Reference Group (NCIN Lung SSCRG). Much of the work of the NCIN overlaps that of the data audits, and therefore Mick Peake looks after both meetings. You can read about the NCIN and its aims on their website. I am a member of the NCIN Steering Group, as well the SSCRG. Sharron Hegginbottom is the other patient member of the SSCRG and she also blogs on this site.
At the end of the meeting, I met Nicky Coombs of NCIN to talk about the role of patients and carers in these groups, and the way that they can be supported in their roles, both educationally and financially. Nicky has recently moved to a post with NCIN from Cancer Research UK. This charity is a major sponsor of the NCRI and all its initiatives including NCIN. The NCRI has about twenty major charities as members of its Board. More in later blogs.
Monday 21st September 2009
London again on National Express, and in the CRUK offices in Lincoln’s Inn Fields I helped to interview two candidates for the chairmanship of the NCRI Breast Cancer Clinical Studies Group. This group maintains a watching brief over the research into breast cancer therapies, and helps to advise on, plan, and monitor research to ensure that as much as possible of cancer treatment is based upon the best available evidence. This group would handle many aspects of research including surgery, radiotherapy, chemotherapy, early diagnosis, screening and aspects of breast cancer survivorship. The chair of this group holds a very influential position in the research world. The two candidates outlined their ideas for the future development of the group. II would like to wish the successful candidate all the very best in the new post, and thank both of them for their excellent interviews. On the way home, I met Myrna Gray on the train heading northwards. Myrna is a lung cancer research advocate and her husband was a lung cancer patient. I met her in 2005 when we were both invited to join the NCRI Strategic Planning Group for PET Scanning Research. The group published its findings in 2007, and the document can be found on the NCRI website. Myrna and I became firm friends, and I have recently encouraged her to join the NCRI Lung Cancer Clinical Studies group alongside Tom Haswell and myself. Myrna applied for the position and sailed through the interview with flying colours. She stayed overnight with my wife and me, as she was going to attend the NCRI meeting in Leeds next day.
Tuesday 22nd September 2009
Myrna, Judith and I travelled to Leeds for the meeting of the NCRI Consumer Liaison Group, which I have chaired since June 2008. This was my fifth meeting in the chair. We had an interesting day at Leeds Town Hall, where speakers presented on topics including hard to run clinical trials, the work of the Clinical Trials advisory committee (CTAAC), how to use the new NCRN website, user-led research, the use of herbal medicines, and the problems of being newly diagnosed with head and neck cancers. People travel to these meetings form the length and breadth of the country, and the forum they help to create is excellent for debating the issues of patients and carers involved in research.
Wednesday 23rd September 2009
I’m really looking forward to the Annual Meeting of the Roy Castle Patient Advocacy Group in Glasgow tomorrow, but first I have to travel back to London to Guy’s Hospital for the steering group meeting of NCIN. We reviewed the work plans, publications and events held by the NCIN, including the work of the SSCRGs mentioned on 16th September. Guy’s hospital is near London Bridge, and two underground lines run through the station there. I stood in the middle of a massive crowd on the Northern Line platform until the dear lady on the intercom informed us that the line was blocked. I raced through to the Jubilee line platform, changed at Green Park to the Victoria Line, and caught my pre-booked train to Glasgow by the skin of my teeth. No time to buy sandwiches at the station, and I couldn’t afford the mortgage needed to buy a sandwich on the train. Thanks London Underground! The ride up the east coast was spectacular, with beautiful views of the Tyne Bridges, Alnmouth, Lindisfarne, and Berwick-upon-Tweed complete with rainbow, and the train pulled in to Auld Reekie at sunset. I type this as the train finishes its journey onwards through Haymarket and Motherwell. As a young boy I would have given anything to make this journey behind one of the great steam engines that used to haul these trains, but the electric expresses are very smooth and fairly quick. Five hours and twenty minutes from Kings Cross to Glasgow Central! Flying Scotsman eat your heart out! I had never ridden the East Coast Main Line until I took this post at NCRI. People ask me if the travelling is a pain, and so far the answer is no. It is nice to be able to work on the train and let someone else drive, but I have always enjoyed journeys almost as much as destinations. My biggest regret about the travel is that Judith can’t always come along with me. I can see the lights on top of the Forth Road Bridge through the carriage windows. Faster than fairies! I am excited about tomorrow’s conference, but this evening I will meet up again with Myrna, and some other good friends. Looking forward to the company, and the food! A new moon is rising over the Firth of Forth, and the view is breathtaking, but to be honest at the moment I would prefer the view across a plate of Harry Ramsden’s Haddock and Chips.
Thursday 24th September 2009
I arrived bedraggled at the Premier Inn last night and was meeted and greeted by the massed bands of the Roy Castle Foundation. Jennifer Dickson, Susan Christie and Rosemary Gillespie treated me to a steak, which sorted out the food problem, and a pint of lager helped to rock me to sleep. Mike Edwards spoke of how welcome he had been made. Next morning in the company of fellow Barnsley Boy, Mike Edwards, and Myrna Gray, I made my way to the City Chambers in Glasgow. What a magnificent building! The staircases, marbled halls, carved wood panels and columns need to be seen to be believed. This must be one of the finest Victorian civic buildings in Britain, if not the world. The Roy Castle Conference was to be held in the front reception room. The dining room was incredible and included a painted mural showing ship workers assembling a steamship, painted in the style of the union banners. A tribute to the hard working people of the great city! And these hard working people have been as hard hit by the curse of lung cancer as any group in the country. It is no coincidence that the main offices of the Foundation are in Liverpool and Glasgow, two cities with similar histories. I had been invited to chair the meeting. The list of speakers was impressive, as ever. Speaking for the Foundation were Rosemary Gillespie, Jesme Fox, Susan Christie and Jennifer Dickson. They are a formidable quartet, and lung patients are lucky to have these women to fight their quarter. Many hours of careful planning had gone in to this meeting, and Susan and Jennifer are to be particularly thanked for their energy and hard work. Jennifer showed us clips from the new DVD that tells the story of the fight against lung cancer. Several of the delegates at the conference appear on the DVD, and speak eloquently of their treatments. Rosemary spoke of her first year in office, and Jesme explored the taboos that surround lung cancer. The other speakers were Mike Edwards (a different one from Inverness), a Scottish TV news presenter, who discussed the problems of getting stories into the media, and Carrie Featherstone, a medical oncologist from the Beatson West of Scotland Cancer Centre in Glasgow, who spoke of the use of PET (Positron Emission Tomography) in the management of lung cancer. But most movingly we heard from patient and carer advocates, Lynn Tilbury, Ann Long, and Gus Grant. Lynn’s husband Mike, Ann and her husband, and Gus, are all lung cancer patients. Their stories were remarkable and motivational, and were for me the highlight of the day. Professor Ray Donnelly, the president and founder of the foundation spoke from the heart, of the need for a “Voice for Lung Cancer”, and he implored the delegates at the meeting to “Get Out There And Shout”. With Susan’s energy and Jennifer’s practical and educational solutions, the foundation should go from strength to strength. I left Myrna in George Square, and accompanied Mike back to Yorkshire on National Express. It had been a very interesting day.
Friday 25th September 2009
Last day of the week before I head for the golf course, and the last meeting was a visit from two representatives of the Drug Development Office (DDO) at CRUK to the Experimental Cancer Medicine Centre (ECMC) in Sheffield. The two visitors were Juliana Callaghan (a fellow biochemistry graduate of York University), and Vicky John. They introduced the work of the DDO in managing the development of New Agents (drugs!) from the laboratory to the clinic. The staff of the ECMC spoke of innovative research taking place in the labs and clinics in Sheffield. The week had been exhausting but very rewarding. The ECMCs around the country will manage early phase research and developments in imaging, novel agents and translational science generally. I just had enough time left for a teleconference about the NCRI Translational (Correlative Science) Clinical Studies Group, with Karen Inns of NCRN and the CSG chair, Mitch Dowsett. 1st tee next stop!
To read more about the National Lung Cancer Audit go to
To read more about the National Cancer Research Institute go to
To read more about the NCRI Consumer Liaison Group go to
To read more about the National Cancer Intelligence Network go to
To read more about the CRUK Drug Development Office go to
To read more about the Experimental Cancer Medicine Centres go to
To read more about The Roy Castle Foundation go to
To read more about PET go to
Saturday 24th and Sunday 25th October 2009. Munich.
I am at the 4th Masterclass of the European Cancer Patients Coalition (ECPC) as a delegate. I travelled here on Friday last via Manchester Airport on a tiny regional jet with enough space for a ten year old. The journey was one of those. A lorry had overturned on the A34 at Wilmslow, which meant that I couldn’t get to the car park that I had booked in time. I went straight to the airport and used the long term car park, only to find that the flight was delayed by 30 minutes anyway, and of course this eventually turned into a 90 minute delay. I was so late arriving in Munich that the buses had stopped running, and I had to take a taxi to the hotel, which cost more than the car park in Manchester. The airport in Munich is actually nearer to Hamburg than it is to Munich! I had forgotten how difficult air travel can be. How I long for the days when we can be beamed up by Scotty! But I mustn’t complain. The restaurant in the hotel had also closed so I was faced with a bar straight out of downtown Chicago. Ribs and Budweiser and Los Angeles Angels v. New York Yankees baseball. Culture Shock.
On Saturday morning I managed to get into Munich for an hour to see the Rathaus and the glockenspiel, and then back to the hotel to be greeted by Jesme Fox, who was one of the speakers at the meeting. I also met Jan Geissler who had been part of the review team for the Consumer Liaison Group (CLG) earlier in the year. Jan is a resident of Munich and the spiritual leader of ECPC. His wife Michi is the clerical engine room of ECPC. Jan and Michi do a great job in running the organisation. Read about them on the link at the bottom. In the past Alf Oliver (vice chair of CLG), Tom Haswell (current member of CLG) and Roger Wilson (past chair of CLG) have all attended meetings of ECPC, and I am carrying their baton. We, the CLG that is, are one of the members of ECPC.
The meeting lasted for two days, and there were sessions about Joint European Action against Cancer (speakers included Prof. Michel Coleman, and Lynn Faulds Wood), about Health Economics and Drug Pricing (speakers included Jesme Fox and Karen Facey) and about Empowering Patients (speakers included Jan Geissler and Neal Southwick from Macmillan Cancer Support). The meeting was delivered in the English language, which meant that some of the delegates had problems following some of the speakers, particularly when they used business speak. The most informative sessions, and possibly the most frustrating were the showcase sessions when members of groups from around the continent were given ten minutes to talk about their involvement. Several of these speakers exceeded their briefs, and took longer than their ten minutes, which meant that others were squeezed and hurried. Chairing these sessions can be difficult. We heard from groups in Germany, Turkey, Romania, Bulgaria, Poland, Greece, Holland, Germany, Italy and Lithuania (and one or two Americans and an Australian). People I met included the following:
Brenda Collins of the Trevor Collins Foundation in England
Olga-Rodica Cridland of Association P.A.V.E.L., the Romanian Organisation for Parents whose Children have Cancer
Viorica Cursaru who works as a United Nations High Commissioner for Refugees (UNHCR) in Bucharest, Romania, but also spends time working for the Myeloma support groups in Romania
Catherine Dahlstrom of GYNSAM, a patient organisation for women with gynaecological cancer in Sweden
Courtney Davis of the University of Sussex, Brighton
Jesme Fox of Roy Castle Lung Cancer Foundation
Jan and Michi Geissler of ECPC
Dr. Vinod K. Goshi, of the Mouth Cancer Foundation in England
Sarunas Narbutas from Lithuania
Neal Southwick of Macmillan Cancer Support
Juta Steinerte from a patient support group in Latvia
Karen Vejen of dadlnet in Denmark
Lynn Faulds Wood of Lynn’s Bowel Cancer Campaign in England
Drs. Dietske van Maanen of Longkanker Informatiecentrum in Baarn in Holland
Anita Waldmann of Myeloma Euronet, in Frankfurt, Germany
I left my new friends from Indiana and Sydney, who now live in Copenhagen and Aalborg to head back in to Munich for the last time. I board the U (underground train?) for Merienplatz, and spend a few minutes with Viorica listening to the Glockenspiel at the Rathaus. I return to the platforms and in this curiously multi-cultural world I take the photographs of a married couple from Stockholm, who now live in Munich, and then catch the S (surface train?) to the Flugenhauf. As I eat my ham sandwich and fries with weisbier, I contemplate this curious country where the beer in my bedroom was complimentary, but I had to order and pay for any tea or coffee. What do you think? I have new acquaintances from Latvia, Sweden, Buckinghamshire, Southampton, Romania, Germany, Bradford, Holland, Brighton and Denmark, and that is just for starters. I may have upset the Polish delegates, by asking them to be quiet during one of the talks by a Lithuanian, but if that is the price I have to pay for international co-operation then so be it. I have learned that minutes are longer in Italy, but having visited Tuscany a few years ago, I suspected that they did anyway. The weekend was one of contradictions. It is easy to be misunderstood when you speak to people whose mother tongue is not English. I heard a Turk talk about the “sharp sword with two hands” and understood what he meant. I dread to think what my attempt to describe a double edged sword in Turkish would have sounded like. I heard an ex-prime minister of Slovenia talk about the need for Prevention. I listened to the organ in the Jesuit church of St. Michael, and remembered why I was in Germany. The youngest speaker at the conference was Sarunas Narbutas from Lithuania. He had single-handedly secured about an extra two million euros for the treatment of patients with chronic myeloid leukaemia (CML) and gastro intestinal stromal tumours (GIST) in Lithuania. The money will be spent on Imatinib and Thalidomide. His story is inspirational.
The fight is well advanced in Britain, but we have to stand shoulder to shoulder with the other nations in the world to achieve true equality. If a Latvian worker has to attend the clinic after his cancer diagnosis clutching an envelope full of Euros to ensure that he gets any treatment at all, then there is no justice. The survival statistics show that survival of cancer in the Baltic States is lower than anywhere else in the EU, and they are closely followed by the Eastern European countries. The UK is in the next rank, and we tend to lag behind the major Western European countries, such as Germany and France. The countries with the best survival statistics in Europe are in Scandinavia. That is postcode lottery of the worst kind. We struggle to understand why we lag behind the other developed countries of Western Europe in these league tables, and a major factor is thought to be that British people do not report their cancer symptoms early enough. Late presentation means that often patients make their first visit to the doctor when the disease is too far advanced for treatment to be effective. Some cancers are relatively easy to spot. Lumps in the testicles or breasts or neck, dark suspicious patches on the skin, pain, and blood in places where it shouldn’t be can be helpful in spotting some types of cancer. Lung cancer isn’t easy to spot. Pancreatic cancer isn’t easy to spot. Ovarian cancer isn’t easy to spot. These three types of cancer are the tough ones to find, and they have terrible survival statistics, even in the better performing countries.
The early signs of lung cancer are almost identical to the first signs of many other chest complaints such as bronchitis, emphysema, asthma, and even the common cold. A bad cough or a cough that changes nature, are possible signs. Coughing blood is a sign which may or may not happen. The cough is something to be aware of. “I thought it was just a smoker’s cough!” is a common story. Keep your eyes on your cough even if you are not a smoker.
We desperately need to find a simple marker for lung cancer. Some chemical found in the blood, or saliva, or urine, or faeces of a lung cancer patient but not in that of a healthy individual, would do the trick. Scientists spend their working lives searching for these markers. Another way to find cancers is using imaging (taking pictures), to show tumours in their early stages. We can take “pictures” using X Rays, or CT scans, or PET scans or MRI scans, and some of you will have had these pictures taken. An issue for the health service is the cost of the screening method. Testing fluids such as blood or urine can be cheap and relatively simple. A trip to the doctor to provide the sample, and then the sample is taken to the labs, and the results come back in a few days, or weeks depending upon the test. Imaging methods can be very expensive. An X ray may cost about a hundred pounds, but a PET scan can cost a thousand, and there are only a limited number of PET scanners in the UK at the moment. These scans can therefore mean a long journey for the patient. Biomarkers are keys to finding cancer early. You can read more about biomarkers on the internet.
After the weekend in Munich, I had two more meetings in London.
The NCRI Board met at Lincoln’s Inn Fields to discuss NCRI matters including finances, the conference, radiotherapy trials, survivorship initiatives, animal research, and the NCIN. The Consumer Liaison Group was also on the agenda, and we were congratulated on the outcome of our review, and warned about the need to focus.
The second meeting was the reconvening of the Lung Cancer and Mesothelioma Advisory Group under the chairmanship of Mick Peake. It was held in the bowels of Wellington House on the South Bank near to Waterloo Station. Jesme Fox and Tom Haswell also attended.
My next foreign trip is to Stirling in Scotland …watch this space.
To read about PAVEL and ICCPO in Romania go to
To read about Catherine Dahlstrom and GYNSAM, a patient organisation for women with gynaecological cancer in Sweden go to
To read about ECPC go to http://www.ecpc-online.org/
To read about Dr. Vinod K. Goshi, and the Mouth Cancer Foundation in UK go to
To read about advocacy for chronic myeloid leukaemia (CML) go to
If you speak Dutch and would like to find Longkanker Informatiecentrum in Holland go to
To read about Anita Waldmann of Myeloma Euronet, in Frankfurt, Germany go to
Friday 8th March 2013
I have been invited to speak at a meeting of the Trent Cancer Registry (TCR) this morning. The registry has collected data about cancer patients for almost sixty years, and will shortly merge with Public Health England. The data is used by the National Cancer Intelligence Network (NCIN) in research to help improve patient care. The meeting was an excellent celebration of their past work, and a look forward to the future of data analysis and collection. The registry has been a cornerstone of the improvement of data collection in cancer that has happened in recent years. I really enjoyed the day. Thank you TCR!
TCR is the registry which acts as the lead for the collection and analysis of local cancer data and national gynaecological cancer data. It is based in Sheffield and works under the direction of David Meechan. David and his team have moved mountains of data, literally. Thankfully computer science has removed the need for piles of paper printouts and punch cards, but the virtual size of the data banks grows exponentially. I enjoyed the opportunity to meet people who had worked for the registry in the earlier years, including Christine Lyon and Douglas McLean. I have worked with David on several groups, including the TCR Steering Group and the NCIN Steering Group.
My talk this morning tried (in 15 minutes) to introduce the audience to the work of patients and other members of the public in the cancer world. I also posed the question “who does this cancer data belong to?” If the data is to be used for research purposes (and I do believe that it should!), what are the checks and balances that need to be in place to ensure that it is used ethically and sensitively, and for maximum patient benefit? Many groups of academics, clinicians and scientists would find this data useful. Buried in the vast banks of data lie the answers to many questions about treatment regimens and drug effects. For example, we could look at the records of patients who have taken statins or aspirin over many years, and see what effect it has had on their outcomes.
Who should be given access to the data? Who should give permission for that access? Where does the authority lie?
Later this year I will be helping with some workshops at Sheffield University, where we will present scenarios of data usage to three different groups of patients. We will tell them about possible uses of their data, and ask them how they feel about the proposals. The research will be led by a senior lecturer of Sheffield University Law School. Given the constraints of those sessions, I will report back about the findings on these pages.
There are groups which advise about the use of data. One of these is the National Information Governance Board (NIGB). According to their website, the NIGB provides advice on the appropriate use, sharing and protection of patient and service user information. The NIGB also advises on the use of powers under Section 251 of the NHS Act 2006 to permit the duty of confidentiality to be set aside, where other legal routes are not available. Like lots of other groups, their identity will change in the near future.
To read more about National Information Governance Board (NIGB) go to
To read more about Trent Cancer Registry (TCR) go to
To read more about the National Cancer Intelligence Network (NCIN) go to
Monday 11th March 2013
I have recently been invited to judge the Europe Pub Med Central Science Writing Competition, which has been arranged and co-ordinated by the British Library. The prizes will be presented tonight, and I am on my way to London for the ceremony. The British Library lives between Euston and the St. Pancras/Kings Cross Railway Station on Euston Road in Central London. If you have never been there, next time you are on Euston Road and have a couple of hours to spare, go along and see it. It is a great modern building and one which holds its place near to these great communication centres with pride. The treasures of the British Library are well worth a visit, housed in a room on the mezzanine. As a student of naval history, it was with some awe that I read here the actual logbook of HMS Victory, written in 1805 by Captain Thomas Hardy, on the date of the Battle of Trafalgar. “Observed one of the Enemy’s Ships blow up and 14 sail of the Enemy’s ships standing to the Southward – Partial Firing continued until 3.40 when a Victory having been reported to the Rt. Hon.ble Viscount Lord Nelson KB and Commander in Chief he died of his wounds.” Understated, real, very moving. But I digress.
The Europe Pub Med Central Science Writing Competition was an attempt to find young scientists who were able to write about science for the general public. A noble cause. My friends and colleagues who work in the cancer research world are often faced with papers, conference presentations, and research protocols which are barely understandable. As a judge of the competition, I was asked to read and rank fourteen papers written by young research students. They were given a choice of nine papers from respected scientific journals, and asked to describe any one of them, in less than 800 words, for a general audience. I cannot yet reveal the results, or I will have to kill you. Watch the websites below after 8.30pm today for the results. The nine papers were chosen by the nine groups which have sponsored the competition. They each describe a research paper in their respective fields, e.g. cancer research, genetics, osteoporosis and cardio-vascular disease.
To read more about Pub Med Central, and the competition go to
To read more about the British Library go to
Tuesday 12th March 2013
And the Winner is …………Ms. Anna Pewsey, of Newnham College, Cambridge University. Her article entitled “Hip, Hip, Hooray!” was chosen by the judges as number one. In second place equal were, Ms Claire Sand of Kings College, London, “Blood Vessels from Skin: The New Frontier in Tissue Engineering” and Mr Ian Le Guillou of Sidney Sussex College, Cambridge “Another Brick in the Wall”. I did meet and was able to congratulate Ian and Anna after the event, but did not find Claire. I would like to give Claire a special mention having missed her last night. To give you a feel for the problem she faced, the abstract of her paper about stem cell engineering included the following….
“The generation of induced pluripotent stem (iPS) cells is an important tool for regenerative medicine. However, the main restriction is the risk of tumor development. In this study we found that during the early stages of somatic cell reprogramming toward a pluripotent state, specific gene expression patterns are altered. Therefore, we developed a method to generate partial-iPS (PiPS) cells by transferring four reprogramming factors (OCT4, SOX2, KLF4, and c-MYC) to human fibroblasts for 4 d. PiPS cells did not form tumors in vivo and clearly displayed the potential to differentiate into endothelial cells (ECs) in response to defined media and culture conditions. To clarify the mechanism of PiPS cell differentiation into ECs, SET translocation (myeloid leukemia-associated) (SET) similar protein (SETSIP) was identified to be induced during somatic cell reprogramming. Importantly, when PiPS cells were treated with VEGF, SETSIP was translocated to the cell nucleus, directly bound to the VE-cadherin promoter, increasing vascular endothelial-cadherin (VE-cadherin) expression levels and EC differentiation. Functionally, PiPS-ECs improved neovascularization and blood flow recovery in a hindlimb ischemic model. Furthermore, PiPS-ECs displayed good attachment, stabilization, patency, and typical vascular structure when seeded on decellularized vessel scaffolds. These findings indicate that reprogramming of fibroblasts into ECs via SETSIP and VEGF has a potential clinical application.”
I’m sure that if you’re a stem cell scientist that makes sound sense, and is eminently understandable….but for me it was a little tough. Her 800 word translation of that was not only understandable, but interesting, engaging and educational. Read it on the website. And read all the others if you get chance. Belatedly, well done Claire, and congratulations on your award!
Over drinks afterwards, Judith and I met two young scientists from Queen Mary College London., Sarah Etheridge and Helena Emich. They work in the Queen Mary Labs in Whitechapel near to The Centre of The Cell. Helena had entered the competition and had been shortlisted, and had also written a lay abstract about the stem cell paper. Sarah and Helena are both nearing the end of their research studies in cancer genetics, and it was great to meet young scientists (I hope they don’t mind me calling them that!) with such passion for their work. As a former biochemist I can see that as science progresses the problems of cancer get more complex. The multiple pathways within the human cell mean that if we block one route for cancer development, then the cancer finds another way to grow. And as one of the young scientists explained in their paper…
“The difficult thing about cancer is that it is made of us – our own cells mutate and grow wildly out control. That means it is unlikely there will ever be a quick fix. Antibiotics work efficiently because bacteria are so different to us that we can develop drugs that target their weaknesses yet barely affect our own cells. But how do you kill something that is the same as you? Current treatments for cancer cause a lot of side-effects in patients because as they try to kill the cancer they also do damage everything else in the body. This is why finding ways to target cancer specifically is so important.” Ian le Guillou. Thanks for your help Ian. And thank you Helena and Sarah.
I also met Liam O’Toole, chief executive of Arthritis Research UK. Lima had in an earlier life worked for CRUK and had worked with Derek Stewart of the NCRI Consumer Liaison Group. Liam spoke with feeling about the power of the patient voice in cancer research. He described how Derek’s calm insistence had been a great force in the early days of data release for research purposes. Derek…Liam sends his regards and best wishes.
I would finally like to thank Anna Kinsey, Karen Walshe and Allan Sudlow of the British Library, the team of competition sponsors (see the website), my fellow judges, and Europe Pub Med Central for arranging and organising the competition. It was a real treat. Very refreshing and engaging! Thank you. Drop in on the British Library if you haven’t done already. If you have, then you know it makes sense.
To read about the Centre of the Cell go to
This facility is an absolute must if you have budding scientists in your family. I was once given a personalised tour of it by Professor Fran Balkwill.