Decembeard for Terry

 

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Chris and his dad Terry

Each year we ask men across the country to bravely ditch their razors and get sponsored to grow a beard to raise money and awareness to support our vital research and lifesaving work.

Over the years we have learned that beard growing can raise a few eyebrows and divide the opinions of wives and partners not to mention the itching. Despite this, Decembeard remains one of our most popular fundraising events.

In 2014 Chris Hill from Nottingham took part with a small twist, he grew his beard over a whole year. Between 1 December 2014 and 1 January 2016 Chris’s beard flourished while he continued to fundraise. As part of this Chris teamed up with Lincoln Green Brewery in Hucknall and produced a very special Weirdy Beardy ale which proved a hit at the Nottingham Beer Festival.

Many of our Decembearders have a special reason for taking part, either personal experience of bowel cancer or in support or in memory of a loved one. Chris is no exception and has been supporting us since he lost his dad Terry to bowel cancer. Terry was diagnosed in late 2011 having consulted the doctor about blood in his poo.

Chris says;

“I can remember the phone call from dad informing me that after another appointment to see his doctor, tests had come back positive for bowel cancer. But they could not operate on him to remove it due to his poor health.

But dad being dad he put a brave face on and carried on with life. He never let on he was scared but in brief moments I could see it in his eyes. Dad never let on how much pain he was in and fought bowel cancer head on. He was due to have chemotherapy but sadly he never got the chance.

Growing a beard for a year was the easy part for me and all the crazy things I did to raise money and awareness I really enjoyed. The hardest part came when I had to say goodbye to my friend the beard. I had dedicated a whole year in memory of my dad and all those people fighting the disease that it left a hole in my life when it had suddenly gone.”

Chris will be taking part in Decembeard again this year in memory of Terry. To join Chris sign up today and help support vital research and lifesaving work to stop bowel cancer.

By Steph Mills, Community Fundraising Manager, Bowel Cancer UK

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The psychological and emotional effects of a bowel cancer diagnosis – Richard’s story

Last week at our healthcare professionals study day there was a really interesting and important presentation about the psychological and emotional effects of a bowel cancer diagnosis. We shared some photos from the presentation on social media and they generated a lot of interest and resonated with many of our supporters.

taking-control

Slide taken from study day presentation

 

The psychological and emotional impact of cancer must not be overlooked and it’s something that people often talk to us about when they share their experience of bowel cancer with us. One such supporter is Richard Roxburgh, 64 from East Lothian. Here he shares his story:

“I first got involved with Bowel Cancer UK for a fundraising initiative. I ran a 5k race for the charity to celebrate the memory of Ali Brownlee, a popular sports commentator known locally as the ‘voice of the Boro’, who died of bowel cancer in February 2016.

For me it was also a cathartic experience, as I was diagnosed with bowel cancer myself in March 2014 after a colonoscopy.  More recently I’ve been told that it’s inoperable.

I was obviously shocked after being diagnosed with bowel cancer but the situation became increasingly complex when I was told I needed six weeks of radiotherapy and chemotherapy before they could operate to remove the tumour.

Then a further scan showed that I had lesions on the lung which was obviously concerning but the surgery still went ahead, with a nine hour operation which left me with a permanent colostomy.

I used to be a really active person so having a colostomy did present some issues which I’ve had to deal with.  My lowest point was in June 2015 when I was told that there was nothing which could be done for the cancer in my lungs, it was too advanced to cure.

Since then, running has definitely helped and getting involved in fundraising for Bowel Cancer UK has been a positive experience. It has allowed me to confront the challenges of the illness more honestly as well as focus on creative use of precious time.

slide

Slide taken from study day presentation

How this translates into practice for me is getting into the right place mentally, if you can do this  and that is a big if, it is possible to live a reasonably balanced, active life despite the shadow hanging over you. In my case that has meant being able to travel quite extensively, with the help of a camper van, do some worthwhile voluntary work (I sit on Edinburgh’s fostering panel at least once a month), continue to a limited extent to play  sports  like golf and tennis, and just get around and spend quality time with friends and family.

I also became a member of a creative writing group, to try and channel the thoughts and feelings in my head, so that I could be open and honest with people about my situation.  Having a terminal diagnosis is not always the easiest topic to discuss and some find it very difficult.

Twelve months ago I was definitely not in the right place – now I can celebrate the fact that I am without over analysing how I made the transition.

My partner Judith has been a huge support as well, I would never have got through the last two years since diagnosis without her love and support.”

We have more information about coping with a diagnosis on our website.

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What did we learn from our colorectal cancer study day in Cardiff?

img_6020This week we invited health professionals from across the UK to the Welsh capital, to take part in our second colorectal cancer study day of the year. We were lucky enough to be joined by a range of engaging and informative speakers. We highlight some of their key take home messages below.

Setting the scene

The day’s chair, Jared Torkington, Consultant Colorectal Surgeon at the University Hospital of Wales, kicked off the event by reminding us that all too often people are still dying from this treatable and curable disease.

Our CEO, Deborah Alsina, painted an important picture of the current bowel cancer landscape. Flagging the importance of early diagnosis, Deborah named endoscopy capacity as the root cause of many diagnostic issues in the UK – a message that was repeated by speakers throughout the day.

And although we know bowel cancer is most common in older adults, Deborah also emphasised the burden of bowel cancer in younger people.  Advanced bowel cancer is another of our priorities, and while access to effective cancer drugs is crucial for these patients, Deborah says to make real headway, we really need to take a holistic pathway-wide approach.

Concluding her talk with some powerful words of wisdom, Deborah said ‘no one individual or sector can stop people dying of bowel cancer, but together we can really make a difference’.

Preventing bowel cancer

Annie Anderson, Professor of Public Health Nutrition at the University of Dundee, also chose some thought-provoking words, as she took to the stage.

‘There isn’t a person diagnosed with cancer that doesn’t wish it could have been prevented’, she said, as she opened her compelling talk.

Lifestyle changes like eating healthily and keeping active could help prevent as much as 50% of all bowel cancers. But Annie says one of the biggest challenges is translating this convincing evidence into actions that could ultimately save lives.

Bowel cancer screening

Hayley Heard, Head of the Welsh Bowel Screening Programme, told us low uptake and limited endoscopy capacity were two of the greatest issues the programme faces. Issues, that sadly ring true across the screening programmes of the other UK nations too.

However, Hayley was hopeful that the introduction of the new Faecal Immunochemical Test (FIT), something we’ve blogged about before, will be a positive step forward and help overcome some of these challenges.

Ongoing challenges 

Limited endoscopy capacity was again reiterated by Richard Roope, a GP and Clinical Champion for the Royal College of General Practitioners. Richard highlighted that we’ve been aware of the issue for a number of years, yet it remains a major stumbling block. Without increased capacity, diagnosing cancer early is to become an ever more complex challenge.

The genetics of bowel cancer

A double-act from the Wales Genetic Service, Karen Bailey and Mark Rogers, illustrated the devastating impact genetic conditions, like Lynch syndrome, can have on many generations of families. That’s why improving identification and awareness of lynch syndrome is something we’ve been calling for as part of our Never too Young Campaign.

Knowing more about genes is also valuable when it comes to treating bowel cancer. Tim Iveson, Consultant Medical Oncologist at University Hospital Southampton, explained how this so-called ‘personalised medicine’ can make a real difference in determining the choice and success of treatment.

Treating bowel cancer with Surgery

We heard more about treatment from Stephen Fenwick, Consultant Liver Surgeon at Aintree University Hospital. Stephen stressed the importance of a joined up approach for advanced bowel cancer patients.

‘Focusing not on the site of the disease, but on the overall burden of disease’ is key, said Stephen. And that’s why it’s so vital that a wide-ranging team of health professionals are involved in decision making from the word go.

Underlining how the decision to operate can often be a complex one, Consultant Gastroenterologist from Cardiff, Sunil Dolwani, took us through some real patient case studies. Involving patients in decisions, and avoiding unnecessary surgery were two of Sunil’s top tips.

Consultant Colorectal Surgeon James Harwood at the University Hospital of Wales, gave a different perspective, focusing specifically on ‘keyhole’ surgery.

This technique can vastly reduce risk of complications. But again, James urged it’s not appropriate for everyone – so it’s essential to decide the best option for each patient individually.

The personal impacts of bowel cancer

Claire Delduca, Clinical Psychologist at Velindre Cancer Centre, brought home some of the realities of cancer. ‘You have found blood’ was displayed on her bold opening slide, as she asked the audience to imagine how they’d feel.

Claire described cancer as a ‘series of transitions’, highlighting that a good support network is crucial. She reminded us that patients are particularly in need of support at the end of their treatment, when the magnitude of the situation often starts to sink in.

The day was fittingly drawn to a close by Julie Hepburn, who told her moving, personal story of bowel cancer. The journey hasn’t always been plain sailing for Julie, who only came to realise her diagnosis in 2014, following an emergency hospital visit.

And although she suffers from some life changing side effects, Julie is now cancer free and enjoying a real sense of fulfilment through her role as a patient representative on several cancer clinical trials.

By Katherine Nash, Senior Research Communications and Information Officer, Bowel Cancer UK

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Improving outcomes through patient data

photoThere is widespread concern about use and misuse of personal data at the moment, in particular health data. Chris Carrigan, a cancer data specialist and former Director of the National Cancer Intelligence Network at Public Health England, explains some of the issues, why sharing data is so important for research and improving patient outcomes and what the ‘use MY data’ campaign sets out to achieve.

The issues with sharing health data

Whatever the rights and wrongs, the care.data programme, which closed in July 2016, did massive damage to the trust that patients have in how the NHS uses their data, or more specifically, in those who want to exploit our data for purposes other than those which patients value. As a result, more than two million patients opted out of care.data, saying they didn’t want their data to be used in this way.

This brought to the fore two fundamental issues:

  1. If patients say “no”, does anyone ever have the right to overrule that wish?
  2. What people were actually saying “no” to and furthermore, who asked those patients about what they DID want their data to be used for?  This, for me, is the more pressing, issue.

As cancer patients and advocates we have a good track record of contributing our informed views and having a voice.  And the NHS, mostly, listens to our voice.  But in terms of data usage, patients were not being informed, nor was their voice being heard.

Why is sharing data in the NHS so important?

Many of the new insights around the outcomes of treatments would not have been possible without the ability for data to be shared and linked.

For example, the main diagnostic test to identify bowel cancer is a colonoscopy.  We know that this test is not 100% accurate but through the use of data we have been able to highlight where improvements could be made to better detect people with the disease. By doing so, we have seen the proportion of people developing bowel cancer within three years of having a colonoscopy fall from 10.6% to 7.3% in six years.

We also know that a quarter of bowel cancers are diagnosed as a result of an emergency presentation.  Bowel cancers which are detected through screening have a 97% survival rate after a year; for those diagnosed through an emergency route this falls to 49%.

Knowing this has helped the NHS to do something about it.  Since the figures were first published, the rate of cancers detected through an emergency route has fallen from 27% to 24%.  That’s the equivalent of over 1,000 patients each year going through a more “managed” diagnostic process, just for bowel cancer.  And we know that fewer patients being diagnosed as an emergency means more patients alive now who perhaps may not have been.

Without shared and linked data, this would still be hidden.

What would happen if no data was shared?

Not having access to the data can have huge implications, in terms of the actual analysis which is possible.  In essence, whilst some analyses would still be possible, it would become harder, and potentially impossible, to look at less common cancers, age groups where cancer is less common, or for different ethnic groups. This happened quite recently in parts of Europe, where sensitivities around data usage led to access to data becoming restricted, which caused huge damage.

To highlight the implications of a loss of access to data we developed scenarios looking at how the most powerful recent piece of national analysis, Routes to Diagnosis, would be affected by data access problems.  The results (see them at www.useMYdata.org.uk/scenarios.shtml) speak for themselves, and highlight the inability to undertake reliable analysis on less common cancers, certain age groups, and small area survival.

The ‘use MY data’ campaign

The ’use MY data’ movement was established to give patients that detailed understanding about their data and to allow them to have that truly informed voice.  We do this by holding workshops to explain to patients how their data flows around the NHS, the benefits of using data to an individual, for society, and for those who will become cancer patients in their lifetime.

Fundamentally, the use MY data movement is about equipping cancer patients with the knowledge to make not just a choice, but an informed choice about data usage, and to equip large numbers of patients with the information that they need in order to advise other patients and groups

Getting involved

By joining the use MY data movement you will also become part of a growing movement of patients and advocates, determined to develop a fuller understanding and have a greater influence in the use of data to save lives. Just email getinvolved@useMYdata.org.uk.

As one of the use MY data members said, “The type of treatment that I had depended so much on the data of patients who went before me”.

By Chris Carrigan, cancer data specialist and former Director of the National Cancer Intelligence Network at Public Health England

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Aspirin and bowel cancer

capp3-group-26th-feb-2014

It’s almost thirty years since Gabriel Kune in Melbourne published a case control study of people with bowel cancer and reported a difference in the proportion of people using regular anti-inflammatory drugs like aspirin.  They concluded that regular use was associated with a much lower cancer risk.  Over the next decade several papers using large data sets supported this conclusion.  The big question was whether the aspirin prevented cancer or simply led to its earlier discovery.  Another possibility was that people who need aspirin are less prone to cancer.  The way to resolve this was to set up formal trials.

750th-newcastle-recruitOne approach was to randomly give a very large number of people either an aspirin or a placebo then follow them.  The US Women’s Health Study in the USA followed this route.  Beginning in the mid 90’s they offered about 18000 women alternate day 81mg cardio aspirin or placebo and gave them a vitamin tablet the other day. In 2005 the study reported no effect of the aspirin on cancer.  Several trials focused on polyp prevention. They argued that bowel cancer develops from polyps so preventing them should provide support for cancer prevention.  The results were mixed; aspirin reduces polyps only by  15%.

In the late 80’s our team had begun to focus on teenagers with Familial Adenomatous Polyposis (FAP) who develop hundreds of polyps and need preventive surgery.  We set up a European trial involving over 200 young people receiving either 2 aspirins or placebo and a sachet of indigestible starch powder compared to normal cornstarch.  There was great support from the families but neither treatment had much effect on polyps.  Meanwhile, we had been involved in the l search for the cause of Hereditary Non-Polyposis Colon Cancer and by chance, the first patient in whom a mismatch repair gene was shown to be faulty was a Newcastle patient.

By the end of February 1994 we had become the world’s first service to offer genetic tests for what we now call Lynch syndrome.  We immediately set about designing a new international study, to be called CAPP2, to test aspirin and resistant starch in a much bigger group of high risk adults.  We decided to count polyps first and arrange longer follow up to see if we might also reduce cancers.  Our first report in 2008 was also a disappointment.  Neither treatment had any obvious effect on polyps.  But we pressed on to count cancers and when the first recruits reached their 10 year anniversary we analysed the data.

The overall follow up was an average of 5 years and we published in the Lancet in 2011 a reduction of more than 50% in colon and other cancers.  That year, Peter Rothwell and colleagues produced an amazing analysis of the cancer rates in people who had taken part in the early aspirin trials to test the effects in people at risk of strokes and heart attacks.  Using cancer registries around Europe they found that people who had been given the active tablets in those trials had fewer cancers.  The US Women’s health Study recontacted their population and found that beyond 10 years the rate of bowel cancers dropped by about 20%.

So we are slowly edging to a recommendation that people at increased risk of bowel cancer should take regular aspirin.  We are still not sure how much to recommend or whether we should only focus on people at high risk.  We have launched CaPP3 to ask people with Lynch syndrome to take aspirin.  If they agree, we give them either 2 aspirin tablets a day like in CAPP2, or 1 tablet or a 100mg Cardio aspirin (“baby aspirin”).  For the first two years they won’t know which dose they are on so we can collect reliable information about side effects then we prescribe the aspirin for at least another three years and count how many cancers develop.  We have over 850 people in the study. If you have Lynch syndrome, please join us!  You can follow me on twitter (@capp3), look up www.capp3.org or contact your local genetics centre.

By Professor Sir John Burn, Institute of Genetic Medicine, Newcastle University.

 

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The new Cancer Drugs Fund. It may be new but has it improved?

Recently a new Cancer Drugs Fund (CDF) came into effect, which changes the way cancer drugs are assessed and funded in England. Previously, the CDF funded all cancer drugs that were not approved by the National Institute for Health and Care Excellence (NICE ) for use on the NHS. However this was deemed to be financially unsustainable and so NHS England and NICE set about looking at how the way cancer drugs are funded could be changed to ensure patients get faster access to the most effective drugs but still be cost-effective for the NHS. You can read about our thoughts on the proposals they consulted on in a previous blog.

Now the changes have been finalised and have come into effect we explain how the new CDF will work and what it means for access to bowel cancer drugs.

How will it work?

Under the new system, all cancer drugs will be assessed by NICE. Cancer drugs will be given one of three recommendations:

  • Yes – Recommended for use on the NHS
  • No – Not recommended for use on the NHS
  • Conditional approval – the drug has the potential to meet NICE cost-effectiveness criteria but more evidence is needed to recommend for use on the NHS

If a drug is given conditional approval, it will move into the CDF for a period of up to two years while real world evidence is gathered but only if the pharmaceutical company agrees. During this time all eligible patients will be able to access the drug.

What happens after the two years?

After the two years, the drug will go through an accelerated NICE reappraisal process. Based on the additional evidence collected during the time the drug is available on the CDF, NICE will either recommend the drug for use on the NHS or it will not recommend it.  A negative NICE decision, at this point, will mean that patients will only be able to access the drug through an individual funding request.

What about the bowel cancer drugs that were on the previous CDF?

Over the next 12 months, NICE will be reappraising all the drugs that were on the previous CDF as of 31 March 2016.

The following bowel cancer drugs were on the CDF and are still available to people who meet the criteria:

  1. Erbitux (cetuximab)
  2. Vecitibix (panitumumab)

Until both these drugs are reappraised, patients can still access them if they meet the criteria.

If after this process they are not recommended for use on the NHS, a notice period of two months will be given. Patients already receiving the drug will continue to have access to it but it will be no longer be available to new patients after this two-month window.

Our Concerns

While the proposals seem like a positive step forward, there is still a lot of uncertainty around how they will work in practice. For example, we are unclear on what type of data is needed for a drug to go from conditional approval  to receive a positive recommendation and how this data should be collected. Furthermore the CDF was, in part, created in recognition that assessment of cancer drugs by NICE was failing patients. With no significant changes to the criteria used by NICE, we are concerned about the possibility that patients may have access to fewer drugs.

Some Good News

NICE has recently published final draft guidance approving Lonsurf (a drug combining trifluridine and tipiracil) for patients with advanced bowel cancer who have previously had treatment.

What’s next?

We’re closely following the progress of the new CDF and keeping an eye on whether it will actually increase access to bowel cancer drugs.  We’ll also be working in coalition with our charity partners to raise our concerns and campaign to improve access to the most effective treatments.

What can you do?

If you’ve had positive or negative experience accessing bowel cancer drugs in the UK please share your story with us. You can also join our Campaign Supporters Network to receive updates about our campaigning work and how you can take action.

By Asha Kaur, Policy Manager, Bowel Cancer UK

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More testing is good news but we need to do more

Andy 1Like any Dad, I’d do anything for my children but when one of them is taken away from you at a young age, and there is nothing you can do, it’s hard to deal with.  I still miss Stephen every single day.  He was a remarkable young man who became a household name, raising millions for charity after inspiring people through his positive attitude to illness.  Inspirational until the end, he died at the age of 19 of bowel cancer just over two years ago in May 2014.

Like me, Stephen had a genetic condition called Lynch syndrome, which meant he had a high risk of developing bowel cancer.  It’s not something many people have heard of but I know now that Lynch syndrome is responsible for around one in 12 cases of bowel cancer in people aged under 50.

I’m no stranger to bowel cancer, having been diagnosed with it twice – in 1989 at the age of 31 and 20 years later in 2009.  It was only second time round that I was tested for Lynch syndrome, and having been diagnosed, now have a colonoscopy every two years.

If I had been genetically tested after the first diagnosis and given regular surveillance screening, it might have been possible to have prevented bowel cancer developing second time around, which would have been welcome as the second diagnosis was a terrible shock and the treatment much harder than the first time.

I noticed Stephen wasn’t well when he was 15 and, as his symptoms continued, he must have gone to the doctors about five times and the hospital on three or four occasions.  We kept telling them about my Lynch syndrome diagnosis, but it was totally dismissed, everyone thought that Stephen was too young to get bowel cancer and you want to believe what you’re told by the medical profession, yet everyone now knows how wrong we all were.   The fact that there was a diagnosis of Lynch syndrome in the family should have led to bowel cancer being ruled out first not last in Stephen’s case.

That’s why I’m supporting Bowel Cancer UK and their Never Too Young campaign, to raise awareness of Lynch syndrome and to ensure better diagnosis and treatment for people under the age of 50 who are at higher risk of developing the disease.

It’s vital that every single person under 50 who is diagnosed with bowel cancer is offered testing for Lynch syndrome.  So I was pleased to hear that 110 out of 156 hospitals in the UK are now doing this, 46 per cent more than last year, as shown by a FOI request sent by Bowel Cancer UK to all UK hospitals.

But I’d like to see every hospital in the UK test people under 50 who are diagnosed with bowel cancer for Lynch syndrome.  And it needs to be done at diagnosis, as I know all too well how long it can take to get the results.

I’d also welcome the test being done throughout the UK automatically for people under 50, rather than just over half of UK hospitals, we need a consistent approach to treatment and care for everyone.

It’s a conveyor belt, you know that it’s going to be another family next week who will affected by bowel cancer.  That’s why I’d like to make a difference, anything I can do to help ensure other families don’t go through the same experience as mine would be a good thing.

If you’d like to help too, join Bowel Cancer UK’s Campaign Supporters’ network, donate to support their work or simply find out more by visiting bowelcanceruk.org.uk.

By Andy Sutton, father of Stephen Sutton

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Volunteers’ Week

Thank you!!.jpgIt’s Volunteers’ Week – an annual initiative to celebrate the contribution volunteers make to charities’ goals. We have a dedicated and passionate team of around 80 volunteers throughout the UK.

Whether it’s delivering our awareness presentation, handing out a leaflet, researching potential organisations to give talks at, shaking a bucket, collecting a cheque, reviewing information or simply lending an ear to someone with a concern, we are continually amazed by the enthusiasm our volunteers display.

Many of them are people who have been through bowel cancer, some are still dealing with the disease and others have lost loved ones – but all of them bring with them, the drive and commitment to raise awareness of this needless killer.

We first started training volunteers to give awareness talks in Scotland in 2010. The initiative was so successful that we rolled it out in England and Northern Ireland the following year. The volunteer programme has grown at a steady pace since then, as has our staff team in order to manage and coordinate it.

The reach of the awareness volunteers is staggering. They deliver talks to a huge variety of groups, such as fire fighters, bus drivers, rotary clubs and council employees. They have also delivered talks to many community groups including Somali, Lebanese, Bengali, Irish, African, Caribbean and Polish groups.

As the programme has developed, we’ve put a process in place to monitor its success. In 2015, our volunteers spoke to 7,000 people face to face with potentially lifesaving messages. Two thirds of those people said they intended to take steps to reduce their risk of bowel cancer such as cutting down on red meat or exercising more.

We also started a three month follow- up with people who had attended a talk. We know that 30% of people who answered a follow-up questionnaire, sought more information about taking part in screening. We also know that 14% of the people we followed up, spoke to a healthcare professional about symptoms. And we know that in 2015 at least two people were treated for polyps that otherwise they may not have known about.

These impressive figures, which are all down to the superb work of our volunteers, helped us to be recognised with an award from the Royal Society of Public Health in 2015. Their feedback stated that we demonstrated a strong commitment to the prevention and early detection of bowel cancer by harnessing and supporting the motivation and willingness of all our volunteers.

We would like to say a huge thank you to everyone who has volunteered for us over the years, whatever they have done. We absolutely could not do what we do without them and wouldn’t be here without them. We are committed to continually improving the volunteer experience, and crucially, as we move into research, getting them even more involved with what we do. We need volunteers to input to our work and we need to keep learning from them.

We are always looking for enthusiastic people to help with our work. Visit out website to find out more.

By Gail Curry, Head of Health Promotion and Training, Bowel Cancer UK 

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An important step forward for bowel cancer screening

Today the Government approved the UK National Screening Committee’s (UKNSC) recommendation to replace the current test used in the Bowel Cancer Screening Programme (BSCP) in England with a new test – the Faecal Immunochemical Test (FIT).

This is great news as FIT is much more accurate and easier to complete than the current screening test, which means we could potentially save more lives from bowel cancer – the UK’s second biggest cancer killer.

Over the years we have proactively engaged with the Bowel Cancer Screening Programme to campaign for this change. Last year we worked with the Cancer Taskforce to ensure adoption of FIT was included as a recommendation in the Cancer Strategy, and we made a strong case for change in our response to the UKNSC consultation on whether the Programme should adopt FIT. Earlier this year our campaign supporters tweeted and wrote to Jane Ellison MP, Minister for Public Health, to encourage her to approve the recommendation and lots of you took part. Thank you!

So what is FIT and why is it better and more accurate than the current test?

What is FIT?

FIT works in a similar way to the current screening test by detecting tiny amounts of blood in the stool that could indicate cancer or large polyps, growths that can develop into cancer. However FIT measures blood in a different way from that used by the current test, the guaiac faecal occult blood test (gFOBT). FIT measures the level of blood in the stool whereas gFOBt only indicates the presence of blood.  Because of this, it is more accurate than the current test.

The FIT kit consists of a small plastic bottle containing a stick with a grooved tip. The FIT sample is collected by scraping the tip of the stick along the bowel motion so that the grooves are covered. The stick is then returned to the bottle which contains a liquid to preserve the sample. The bottle is clicked shut and can then be safely posted back to the screening laboratory for analysis.

The key difference here is that FIT requires only one sample rather than three like gFOBt.

FIT test1

Benefits of FIT vs gFOBT

In April 2014, the Bowel Cancer Screening Programme began a six-month pilot study to assess the clinical, financial and organisational implications of adopting FIT in England. The pilot took place at two of the five regional BCSP Hubs (Southern Hub and Midlands & North West Hub) and their associated Screening Centres.

The pilot found that FIT has many practical and clinical advantages over the current gFOBT including picking up more cancers and improving uptake.

Picking up more cancers: The pilot found that FIT picks up twice as many cancers and four times as many advanced adenomas as the current screening test. This is important because the more cancers we can pick up early, the more lives we can save. We know that cancers picked up through the screening are more likely to be early stage cancers. The earlier bowel cancer is detected, the easier it is to treat and the greater chance of survival.

Improving uptake: FIT has been shown to increase the number of people participating in the Bowel Cancer Screening Programme, particularly for previous non-responders and first-timers, as well as hard to reach groups, such as ethnic and deprived groups. It increases uptake by 10% and doubles it in people who previously haven’t responded. Currently only around half of those invited take part in the Bowel Cancer Screening Programme, meaning opportunities to detect cancer early are being lost.

What happens now?

Ministerial approval means that the Bowel Cancer Screening Programme can begin the process of implementing FIT. This could take up to 18 months and we’ll be working with them to ensure FIT is implemented on time.

But we won’t be stopping there. While Scotland announced last year that they will be adopting FIT, both Wales and Northern Ireland have yet to agree to this happening. We’ll continue our campaign to make sure FIT is adopted across the UK.

Meanwhile, until FIT is introduced we would encourage everyone, of screening age, to take part in the Bowel Cancer Screening Programme no matter where you live in the UK – it could save your life.

Find out more about screening here.

By Asha Kaur, Policy Manager, Bowel Cancer UK 

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A massive thank you from me to you

As we come to the end of Bowel Cancer Awareness Month, Bowel Cancer UK Chief Executive Deborah Alsina looks back at the month and everything you have helped us achieve.

Bowel Cancer Awareness Month continues to be a fantastic opportunity for us to raise the profile of bowel cancer and to raise funds to support our work. But it only continues to be a great month because of the support of people like you.

Hundreds of you signed up to our new fundraiser Be a Star, Bake a Cake and we have been supremely impressed by your baking creativity. We are truly grateful for the thousands of pounds you have raised. We were also delighted to have the support of a number of amazing celebrity chefs including The Hairy Bikers, Rick Stein and Gino Di’Acampo who all generously donated their own signature recipes to the campaign.

We’ve delivered awareness talks up and down the UK during the month educating people about the symptoms to look out for, factors that can increase your risk of bowel cancer and providing information about how to take part in screening. The talks are delivered by our amazing volunteers who all have a personal experience of bowel cancer. Throughout April they are particularly busy and we are always indebted to their dedication and commitment.

Thousands of you supported us on social media and were joined by many MPs, policy makers, hospitals, businesses and healthcare commissioning groups, sharing our Facebook posts, retweeting our messages on Twitter and watching our films on YouTube. It might not seem much to hit the retweet or share button on your phone, but just that small action helps spread the word and raise awareness of bowel cancer to people that might not have otherwise heard about it.

And we’ve sent out hundreds of Bowel Cancer Awareness Month information packs full of booklets, posters and materials so that organisations across the UK can hold information stalls and decorate their noticeboards. We’ve loved seeing the photos of your displays with lots of them being extremely creative and eye catching!

This is just a small snap shot of what has been going on throughout April and how patients, family and friends, healthcare professionals, private and public sector organisations and members of the general public have come together to give bowel cancer awareness a boost and support Bowel Cancer UK.

One of my close patient friends passed away a few days ago, just one of around 1,300 people who will have died of bowel cancer during this month.  One of her final wishes was that we all continue to raise awareness to stop the terrible pain and suffering that bowel cancer can cause, happening to other families.  And we will. We are determined to lead the change needed to stop bowel cancer for good.

So a personal and massive thank you from me and everyone here at Bowel Cancer UK for everything that you do to support, please do not stop. We cannot do this without you, but together we can stop bowel cancer in our lifetimes.

By Deborah Alsina, Chief Executive, Bowel Cancer UK 

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