Leukaemia CARE – Spot Leukaemia

This September for Blood Cancer Awareness Month (BCAM), Leukaemia CARE are working to improve public understanding of leukaemia and raise awareness of the most common symptoms patients experience before they are diagnosed.

In the UK, 38% of leukaemia patients are diagnosed via emergency presentation, compared to a cancer average of 22%. The key focus is driving earlier diagnosis of leukaemia, to improve patient experience and save lives.

Leukaemia Care has developed a campaign called Spot Leukaemia which encourages people to learn about leukaemia and the common symptoms. Leukaemia can be hard to spot because the signs and symptoms are common to other unrelated illnesses. Knowing what to look out for could help you make the decision to visit your GP sooner.

Leukaemia Care has also been contacting GPs to inform them of the campaign, so that they are aware of Spot Leukaemia and the messaging, in case patients ask them about symptoms they are experiencing.

The campaign is designed with one thing in mind: Awareness.

To this end, can you help Leukaemia Care raise awareness for this campaign by reading and sharing the information on this page and signing up for the Thunderclap?

www.leukaemiacare.org.uk/spot-leukaemia

Thanks.

Birmingham Mail story – Leukaemia Man – NOT EXCEPTIONAL!

This is possibly the most important post I’ve carried to date. It compounds all of our fears about our CML drugs and exposes NHS England bureaucracy as a cruel, unsympathetic, misguided fool. This is the story of a father-of-four, who lives in England, and has received the devastating news that he does not qualify for Ponatinib, a treatment freely available in Scotland and Wales. This drug is his last chance and he’s been told that his case is “not exceptional.” Thank you to the Birmingham Mail and to reporter Alison Stacey for covering this and for contacting me and asking for my comment.

This is not an isolated incident and I am in touch with another gentleman who is in a similar position who has been told that he’s not exceptional either, I’ll be writing about him next week.

This, in a city where we have one of the finest blood cancer charities in Europe, Cure Leukaemia, desperately raising money to save lives. Khalid attends the same hospital as me, the QE in Birmingham; I can only imagine their despair at not being able to give him the drugs that he needs.

And the response from NHS England: “NHS England and NICE will shortly be consulting on a proposed new system for commissioning cancer drugs…” SHORTLY!! Written by people who don’t realise the consequence of their actions – cancelled reviews, cancelled meetings and a new process that only exists as a blank sheet of paper. All this whilst people die. If Khalid lived in Scotland or Wales he’d be taking Potaninib right now; afforded another lifeline.

We’re putting a patient pack together right now to help you campaign but in the meantime share the blog post, share the original article and show your support for Khalid. NHS England have to hand the keys to the medicine cabinet over, this is not about extending lives, it’s about saving them – to refuse to do is a death sentence.

Kris Griffin

Click the headline to take you to the original article.

Kings Heath dad denied ‘wonder’ cancer drug and told his case is ‘not exceptional’

Father-of-four Khalid Younis, 43, does not qualify for Ponatinib because of postcode lottery

A dying Birmingham dad has been denied a potentially life-saving cancer drug by the NHS in a postcode lottery scandal – and told his case is ‘not exceptional’.

Father-of-four Khalid Younis, from Kings Heath, has received the devastating news that he does not qualify for Ponatinib, a treatment freely available in Scotland and Wales.

The new ‘wonder’ drug is the only treatment left for the 43-year-old who is battling Chronic Myleoid Leukaemia (CML), as his body has become resistant to all other medicines.

Former carpet fitter Khalid, a patient at Birmingham’s Queen Elizabeth Hospital, said: “They say I’m not exceptional, but talk to my Mum, talk to my kids, they’ll tell you I’m exceptional.

“It seems crazy. I have even considered moving to Wales so that I can get the treatment, but I worry about putting my family through it.

“We are in a very sad, vulnerable and stressful situation.”

Khalid’s case comes just days after NHS England announced it is cutting 16 drugs from its Cancer Drugs Fund after overspending by £70 million.

For Khalid the postcode cancer lottery seems desperately unfair as living in England means his survival odds have been drastically reduced.

As he is unable to have a stem cell transplant due to a lung condition, the drug would have been his last shot at beating the leukaemia.

“In a way it’s more painful to know that there’s something out there that could treat me, but I just can’t get Ponatinib,’’ said Khalid.

“This is England, the most beautiful country in the world. They can spend millions on Wembley Stadium, but when it comes to a Dad’s cancer treatment there is not enough money.

“I am truly blessed that I have my amazing family and friends around me. I worry that there must be people out there going through the same thing as me, but on their own.”

Patient advocate Kris Griffin explained this in not an uncommon story for CML patients, as NHS England restricts the amount of drugs patients can access.

“We are not talking about extending his life for a few months so he can prepare to say goodbye,” said Kris.

“We talk about finding a cure for cancer and one comes along we say it is too expensive. It’s insane.

“How is a man not ‘exceptionable’, when he has no other option? This could save his life, and to refuse him is inexcusable.”

A spokesman for NHS England said: “We have every sympathy with anyone in this position.

“NHS England and NICE will shortly be consulting on a proposed new system for commissioning cancer drugs. The new system will be designed to provide the NHS with a more systematic approach to getting the best price for cancer drugs, meaning more treatments can be made available, and give a greater focus on evaluation, leading to the best drugs progressing swiftly to routine commissioning.”
21:00, 16 SEPTEMBER 2015
BY ALISON STACEY

Khalid Younis (Birmingham Mail)

Geoff Thomas & Le Tour team reaches Paris finale

In 2003 Geoff Thomas was diagnosed with chronic myeloid leukaemia (CML) and was given less than three months to live. Following treatment from Cure Leukaemia co-founder Professor Charlie Craddock, he has been in remission since January 2005. I was diagnosed in 2008 and received a very different treatment path, also from Professor Craddock. Geoff received a transplant and I take the drugs, we both understand how lucky we are to still be here.

I’m a football fan, so at first it was a thrill to meet Geoff. As the time has passed my admiration for him as a man and as an incredible charity fundraiser has grown. I’m blessed to know him, I love catching up with him, we put the world to rights and I’ve watched with pride as his Le Tour vision has taken shape.

Geoff Thomas and Kris Griffin

To celebrate being 10 years in remission his aim is to raise a huge £1million for Cure Leukaemia after riding ‘Le Tour – One Day Ahead’ and London 2 Paris. The £1million raised will go towards boosting the life-saving work at the Centre for Clinical Haematology at the QE Hospital – where he and I were treated by Professor Craddock. The money will increase the centres ability to deliver pioneering treatments for blood cancer patients at this centre of excellence in Birmingham.

So, last month Geoff cycled all twenty-one stages of the Tour de France, just one day ahead of Le Tour 2015. Along with a closed group of twenty participants, it was a once in a lifetime opportunity to complete one of the toughest physical challenges around.

Le Tour – One Day Ahead set off from Utrecht, Holland, on July 3 and since then each cyclist burned around 95,000 calories and climbed 40,000 metres in pedalling almost 2,100 miles. The team had to contend with 40-plus degree heat, wall-like ascents and frightening mountain-top thunderstorms in riding an average of 110 miles a day.

Geoff was joined by Birmingham-based duo Melissa Brand, aged 35, and Stephen Jones, 53, James Maltin, 39, of Wiltshire, Doug McKinnon, 55, from Brighton, Hayden Groves, 41, of Hertfordshire, Guildford-based Ciaran Doran, 49, Trevor Clarke, 49, from Rugby, Simon Gueller, 50, from Yorkshire, Dom Goggins, 30, of Manchester, and Helen Russell, 39, from Bromsgrove in riding the punishing Tour de France route, cycling each of the 21 stages a day before the professionals.

Helen and James required stitches after crashes during an eventful first week while Simon took on Le Tour just three weeks after suffering a collapsed lung and broken ribs and Doug had ongoing knee problems. The support staff were also kept busy treating dehydration, saddle sores, sickness and blisters to keep the riders on their bikes as they were pushed to the limit.

The team’s superhuman efforts have pushed Geoff’s fundraising total for Cure Leukaemia – the blood cancer charity he is Patron of and owes his life to – past the £650,000 mark. Le Tour – One Day Ahead followed hot on the heels of Geoff’s other major cycling challenge this summer, London 2 Paris. Both are flagship events in his bid to raise £2million for Cure Leukaemia inside two years.

A slightly controversial decision to ride two of the stages with former pr-cyclist Lance Armstrong has also been vindicated. Armstrong played a critical role in Geoff’s leukaemia battle, with the cyclist having beaten testicular cancer. Geoff was inspired by Lance Armstrong’s book It’s Not About the Bike: My Journey Back to Life and inspired Geoff to make the 2005 charity ride along the route of the Tour de France. Whilst not condoning his actions there has to come a point when we put the knives down and give people an opportunity to earn forgiveness. Armstrong raised over $500million dollars for his own charity and if his current actions mean that he is bringing publicity and donations to Le Tour then I don’t have a problem with that. It’s not a matter of principle, this one’s a matter of saving the lives of leukaemia patients and people like, UCI President, Brian Cookson could probably do with reminding themselves of that.

“We’re raised over £650,000 now and have set some really good foundations for next year and reaching that overall £2million target. London 2 Paris is only going to grow for Cure Leukaemia and Le Tour – One Day Ahead has gone worldwide. We’ve had so many people enquire about next year’s event that we might need a double-decker bus to fit the team in! Lance’s involvement has been central to that. It allowed us to put our message onto the world stage. People are more aware of what we’re trying to do and it’s up to me now to build on the foundations and raise a lot more awareness and money over the next five or ten years.”

For the record, Geoff did his very best to persuade me to join him, he was serious too, he always is when it comes down to fundraising. In my current state of fitness and aversion to bikes I had to decline. I explained that I’m more suited to the advocacy side of our work but he wasn’t having any of it. Can I see myself cycling 2,200 miles? No, but you never say never. And if anyone were to persuade me if would be Geoff.

Please sponsor Geoff, not only is his achievement an incredible one but the money is going to such a great cause, it actually makes me emotional thinking about it. You simply don’t realise how lucky you are until you sit in a cancer clinic, looking around, waiting and realising that much of it is built on charitable donations from amazing people. Please donate…

To sponsor Geoff, visit: www.justgiving.com/Geoff-Thomas-2015

To register your interest for Le Tour – One Day Ahead 2016 visit: www.beforethetour.com

Cure Leukaemia was established in 2003 to allow patients with blood cancer in our region to access the remarkably effective new treatments which were then becoming available. To find out more please visit: www.cureleukaemia.co.uk

The ex-England footballer and his team of ten amateur cyclists brought their brutal 3,360km ride to an end when they crossed the finish line under the shadow of the Eiffel Tower on Saturday afternoon, via the Arc de Triomphe and Champs-Elysees.

Britain Against Cancer 2014

This was the busiest Britain Against Cancer conference to date. The hall was packed and the exhibition heaving with exhibitors and delegates. Had the election brought people out? The chasm that opens next May could realise plenty of opportunities. Such a shame that various stakeholders in the war on cancer don’t realise the same opportunities.

The Cancer Drug Fund was booted around like a wartime Christmas football and plenty of goodies were hung on the tree of ‘what if’, enticing delegates with their sparkly charm; alas like many decorations, hollow inside. The conference was chaired by the suave, authoritative figure of Jon Baron MP, again in his guise as Chair of the All Party Political Group on Cancer (APPGC). If ever there was a politician with an assured career as a TV heavyweight politico, should the election go wrong, this is your man.

Kris Griffin and John Baron MP

After snappy opening remarks where John Baron suggested that Clinical Commissioning Groups (CCGs) would be driven to focus on public health if their cancer survival rates were up in lights, the conference swung into action with Simon Stevens, Chief Executive NHS England. Stevens almost immediately announced plans for 1 year survival rates to be added to CCG delivery dashboard – it was almost like it had been foretold. Cynicism aside, this is a positive development allowing us to compare CCGs and focus on the areas that need the most support.

The rest of Stevens’ delivery was less of a feast and more of an overview with one eye firmly on 2020. He covered childhood obesity and improvements in radiotherapy and diagnosis. He advocated a focus on coming to sensible agreements with pharma, as if we hadn’t been trying to do this for the last 20 years, and promised to set up a new task force with a view to delivering cancer treatment through 2020 and beyond. The ‘task force’ is a political black hole, in the same twilight zone as the independent enquiry, I have no idea what it means, what it does and how much it costs. Sounds good when it’s hauled into a packed conference though!

Onto the Secretary of State for Health, The Right Honorable Jeremy Hunt MP; sleeves rolled up, no notes and striding the stage like a modern-day master of illusion. He told us that we have the best hospitals, doctors and research but we have the lowest survival rates for cancer. He suggested this was a paradox, I’d suggest it is simply bad management. I love our NHS staff to bits but when I had to take my 91-year-old Nan into hospital last week I counted 16 trolleys in a corridor queuing to get into A&E; it took nearly 12 hours to find my Nan a bed on a ward. The smoke and mirrors continued; there would be investment into genome research (where data could be linked to individual records) and a focus on prevention and early diagnosis.  We would build our cancer strategy on four pillars: money, new models of care, innovation and culture (improved accountability and transparency). This makes me wonder what we’ve been building our strategy on for the last 5 years. He sounded like a man who had run out of steam, there was lots of, ‘what we want’ but not much how it’s going to be done, or how it’s going to be paid for. All-in-all a typical pre-election offer with very little substance. A flash of light and a puff of smoke, he was gone. I was quite disappointed he didn’t pull a coin from a child’s ear.

The panel with Professor Julia Verne (Strategic Public Health Lead for the National Cancer Intelligence Network), Professor Nazneen Rahman (Professor of Human Genetics and Head of Division of Genetics & Epidemiology at The Institute of Cancer Research, London and a Consultant Clinical Geneticist and Head of Cancer Genetics at The Royal Marsden), and Geoff Thomas (Former patient and Patron of Cure Leukaemia) was blessed with a single moment of genius. In summing up, the panel were asked to make one wish in the battle against cancer, Geoff suggested that we unshackle our consultants and give them what they need, in order to treat people effectively. Geoff’s moral cause is a simple one but it’s effective and, as patients, it cuts to the heart of what we want and try to do every day. Geoff’s approach is one we can all learn from, don’t listen to the cynics and if you can’t go around them, go through them.

The panel discussed heath literacy, the power of information, alcohol, tobacco, getting systems right and the prevention of the HPV virus with vaccination. Professor Verne suggested that data is everything in understanding cancer survival agenda and that patients should be better informed. There were lots of questions for them on how to reduce inequalities in cancer outcomes and a clear message about the one year survival rates on the CCG delivery dashboard: that it will improve diagnosis and outcomes across the board. Time will tell.

The Shadow Secretary of State for Health, Andy Burnham MP, made the most of the opportunity to talk to the largest conference on cancer in the UK and certainly outshone his ministerial counterpart. He condemned the Coalition of missing targets and stalling the progress on cancer treatment.He promised a new cancer strategy within 6 months of forming a government with a view to being the best in Europe. He wanted to give children a healthier start in life, tackle tobacco related harm and will bring plain tobacco packaging in. He felt that no child should leave education without being able to recognise early signs of cancer and paid tribute to Stephen Sutton and the work of the Teenage Cancer Trust. He pledged to push access to tests to within 1 week by 2020, this would be paid for via a levy on the tobacco industry. He also promised to improve screening for lung, ovarian and bowl cancer and gave a firm commitment to radiotherapy.

Secretary of State for Health, The Right Honorable Jeremy Hunt MP

He pledged to do all he could to understand and fix under-treatment for the elderly, commit to research, improve access to data, speed up clinical trials and provide physical, mental and social support for people living with cancer. He spoke with passion about the right to die at home and said he would do all he could to build a new right in the NHS constitution to ensure patients had the choice. He covered pretty much every base he could, a cynic would say it’s easy to do in opposition, perhaps it’ll be a different story given power and the financial restriction he would be under. Ultimately I trust Andy Burnham. I’ve been lucky enough to speak to him on several occasions, he has always been honest and has always been up-front in his beliefs. he has qualities that I admire in a politician.

What is worrying is his plan for the Cancer Drugs Fund (CDF). He feels it is indefensible to take money from one health-pot to put into another; referring to radiotherapy and surgery being treated as second class treatments. In his defence he told me this 2 years ago and he clearly hasn’t changed his mind. A Labour government would replace the CDF with a Cancer Treatment Fund, this would cover treatment and not just drugs.

There would be a continuation of drugs but a review of NICE (National Institute of Clinical Excellence) and the appraisal process. Ultimately he wants equality across the cancer board.  Labour would use Pharmaceutical Price Regulation Scheme (PPRS) revenues to replace and expand the new Cancer Treatment Fund. Existing funding would continue but there would be less money to fund expensive, new, innovative drugs, drugs that the CML community have relied on for such a long time. The fund would increase from £280m to £330m, there would have to be cuts to drugs to provide more money to other treatments. You can read the full story on this particular announcement at the BBC News website.

It’s a worrying development. My colleague and I debated, at length, whether we were cancer advocates or CML advocates. For the cancer patient this is welcome news and it pleases me. But as someone with CML who campaigns for newly diagnosed patients this is a disaster, it could mean that even less drugs are available in 1 year than there are now. CML treatment is at the forefront of the war on cancer. For generations we wished for a tablet that could cure the patient, now it’s here we make it difficult to obtain. There is much reflection to be had.

John Baron MP on stage

Next up a break-out session that was always going to be contentious: Are new cancer drugs too expensive for routine use on the NHS? Expertly chaired by Alastair McLellan (Editor, Health Service Journal) and featuring Leela Barham (Founder, Leela Barham Economic Consulting), Mike Birtwistle (Founding Partner, Incisive Health), Meindert Boyen (NICE Technical Appraisal Programme Director) and Barbara McLaughlan (Head of External Affairs, Oncology, Novartis). Whilst Barbara McLaughlan suggested that a new system for the Cancer Drugs Fund lacks transparency and fairness, Boyen countered by saying that every NICE decision to approve a drug means ‘denying health’ to other groups of patients. He went as far as saying that NICE would be happy to authorise more expensive cancer drugs if that is what commissioners want. The stand-off between pharma and government was never more evident, thankfully both guests reasoned with dignity and intelligence. Leela and Mike were the cats in the pigeon party.

Whilst Barham said that the Cancer Drugs Fund is driven by politics, it doesn’t offer value for money and distracts from more important issues. She also pointed out that the Government audit of the Cancer Drugs Fund has never been published. Birtwistle felt that the Cancer Drugs Fund was a temporary solution and is approaching ‘breaking point’ and that the first two years of Cancer Drugs Fund were wasted, as there was no development to establish permanent solutions. The panel was incredibly insightful and kudos to whoever put this one together, it’s been a long time since I’ve seen such a productive discussion.

Finally, to end the conference, Sean Duffy, National Clinical Director for Cancer for NHS England, presented on the inequalities faced by older people affected by cancer, late diagnosis and reduced access to treatment. He felt there should be more transparency on quality and outcomes and praised patient power. He was the only speaker who used the word cure and I applaud him for that. I was lucky enough to ask the question: what assessment has been made of how the outcomes for patients with rarer cancers in the UK compare to those in Europe and what more could be done in the run up to 2020? Sean provided a detailed, positive answer that intimated that  rarer cancers will be a focus for next round of International Cancer Benchmarking Project.

Time’s up. Conferences this challenging only happens before an election. Andy Burnham made the most of his opportunity, he drew a line in the sand. I think there were wasted opportunities and crowd-pleasing pledges, although the record crowd knew that they had the power in 6 months. I’m worried that Labour is a danger to CML patients and I’m baffled thatpharma and Government still can’t get to grips that, ultimately, they both want the same thing. As more generic drugs come on to the market, they’ll both lose out, all this will happen over the next 10 years. In the meantime we have a responsibility to patients newly diagnosed and I hope that we continue breaking through.

Britain Against Cancer website

Geoff Thomas and Cure Leukaemia Launch Biggest Fundraiser

Ultimately, it’s about curing cancer and if that doesn’t grab your attention then nothing will.

Last night was the launch of the biggest fundraiser in the history of Cure Leukaemia, the Birmingham based charity founded by Professor Charlie Craddock and Graham Hampson Silk.

Deloitte in Brindley Place hosted the event where former England footballer Geoff Thomas told the audience he will hold two major cycling events in 2015 to support the work of Cure Leukaemia and Professor Charlie Craddock in Birmingham. This comes ten years after going into remission from leukaemia himself.

In 2003 Geoff was diagnosed with chronic myeloid leukaemia (CML) and was given less than three months to live. Following treatment from Cure Leukaemia co-founder Professor Charlie Craddock, including a bone marrow transplant from his sister, Geoff has been in remission since January 2005. Geoff now aims to raise £2million in two years by holding two unique cycling events for an exlsuive number of participants.

Firstly, in June 2015 Geoff will lead a closed group of 300 cyclists on a four-day, 500 kilometre cycling challenge: ‘London 2 Paris: Inspiring the Revolution’. The event is built for both keen cyclists and beginners looking for a new challenge – every aspect of the ride is planned with precision and will be a professional event for amateur riders. It might sound like an event only fit for cycling’s elite, but with four different speed groups, this is something anyone can achieve. It also boasts itself as one of the ONLY events that offers rolling road closures throughout France.

Six months after Geoff’s treatment finished in 2005 and inspired by cancer survivor and pro-cyclist Lance Armstrong, Geoff set himself the challenge of cycling the Tour de France 2005 route two days ahead of the race. Geoff succeeded in his 2005 challenge and his second major cycling event will revisit the challenge of cycling all twenty-one stages of the Tour de France; this time, just one day ahead of Le Tour 2015. Along with a closed group of only twenty participants, this will be a once in a lifetime opportunity to join Geoff in completing one of the toughest physical challenges around.

The event was a huge success with many signing up on the evening, Geoff was more energised than I’ve seen him for a long time and Charlie, with ususal humility, had a steely resolve that suggested these extra funds for the charity could be a real game-changer. We’ve already seen the Centre for Clinical Haematology at the QE Hospital in Birmingham become one of the leading centre in the world for the development of new drug and transplant treatments for patients with blood cancers. These new approaches to clinical care are providing a new economic force for the city – in life sciences. The focus on ‘cure’ from everyone at the charity is to be commended and the leadership from CEO, James McLaughlin has been outstanding.

Please visit the links and consider signing up and supporting these events.

www.l2prevolution.com
www.beforethetour.com
www.cureleukaemia.co.uk