On the Cancer Drugs Fund

Lisa Hinsley. (photo: Beatrice Hinsley)

Lisa Hinsley. (photo: Beatrice Hinsley)

This article was originally published in the Pharmafocus supplement ‘Breaking into oncology’ in March 2014.

A little more than a year ago, Lisa Hinsley’s prospects were not good. The mother of three had been diagnosed with bowel cancer the previous summer – and the growth had spread to her liver.

After an initial operation to remove the primary tumour, and three months of chemotherapy, she was preparing to go under the knife again. But before the procedure could take place, doctors discovered that the cancer had grown further to a point that surgery was no longer an option.

‘It was awful,’ the 42-year-old recalls, speaking from her home on the Wirral in north-west England. “I was basically put in the box of incurable. It was a shock to think that if I lasted five years I would be lucky.”

Fast forward to the present day and, although she is hesitant to build up expectations, Lisa’s outlook is considerably more positive: “Now I’m sort of beginning to think that maybe I’ll get past this and just live my life as everybody else does.”

For Lisa, the crucial turning point came when her oncologist decided she should be treated with Avastin. Previous chemotherapy had kept her condition stable, but during the subsequent recovery period, her cancer had grown – and three tumours had become 11.

“It was quite a shocking change,” she says, “but after three months of Avastin, [and chemotherapy agents] capecitabine [Roche’s Xeloda] and oxaliplatin combined, I went down to two tumours – which was less than I had originally had. And the growths that were left were nearly 50% smaller.”

However, acquiring Roche’s Avastin (bevacizumab) was not a straightforward matter. Despite being the top-selling cancer drug in the world – with licences for colorectal, ovarian, lung, kidney and breast cancers – it has yet to be approved by UK health watchdog NICE for any indication.

With a price tag of nearly £21,000 per patient per year – and an average added life expectancy of just six weeks for colorectal cancer – the authority does not deem the treatment to be cost-effective, meaning it is unavailable on the NHS.

This meant Lisa’s oncologist had to apply for Avastin through the Cancer Drugs Fund (CDF), a ring-fenced bursary worth £200 million per year established by the coalition government in 2010.

The CDF has both its supporters and detractors. Depending on your political viewpoint, its introduction was either a last-minute quick-fix by Whitehall to counter damning tabloid headlines, or a benevolent, temporary safety net to protect NHS patients while long-standing access issues were addressed.

Regardless of its raison d’être, the simple fact is that over the last three years the CDF has enabled more than 34,000 people to access treatment approved by European regulatory authorities that is unavailable through the UK health service.

For Stuart Barber, campaigns director at the charity Beating Bowel Cancer, the fund’s introduction was a ‘game-changer’ in UK cancer care.

“The CDF changed the conversation between patient and doctor,” he says.

“Before, the conversation was ‘how long have I got left’, now it’s more about ‘what treatment options are available for me’.”

Knock-on benefits

Barber raises the point that cancer treatment is not only about extending life expectancy, but also opening up other treatment options – something the CDF has facilitated.

“Patients have told us that using CDF treatments can act as a gateway to other types of treatment,” he notes.

“For example, a patient could be told their liver tumours are inoperable, but these treatments could allow an operation in the future if they respond well.”

This is exactly what happened in Lisa’s case. The reduction in the number and size of her tumours opened the door to Selective Internal Radiation Therapy (SIRT) – and although she’s not completely in the clear yet, it appears to have had a very positive impact on her condition.

“The radiotherapy seems to have killed the main tumours and there appears to be no growth from the outside,” she says. “So, possibly after the next scan, they might start looking a lot more positively at my prospects.”

Another less obvious benefit of the fund is the fact that it can boost patients’ suitability for clinical trials of new treatments. Paul Catchpole, director of Value and Access at pharma group the ABPI, explains: “It’s allowed patients to get access to some cancer drugs that haven’t been available in the UK for some time because they’ve never been approved by NICE.

“That means that patients who have become established on those treatments may become suitable for clinical trials of newer treatments because their standard of care has been brought up to date, compared to other countries.”

CDF extension

Catchpole’s organisation has been supportive of the fund and welcomed the announcement in September that it would be extended to 2016.

This was a sentiment echoed by many in the charity sector – and the patients with whom they work. Breast Cancer Care’s assistant director of services, Liz Carroll, said at the time that many patients “had been telling us for months of their anxiety around the uncertain future of the Fund”.

She added: “This can be especially relevant for those living with secondary (advanced) breast cancer, for whom time is running out. Many treatments are no longer a choice for them but drugs which have been approved but unlicensed by NICE can offer a lifeline.”

According to Catchpole, the ABPI has always believed that “the CDF should be extended until a time that whatever replaces it is able to demonstrably show levels of patient access equivalent to what we have with the current system.”

He continues: “We’ve made some good progress, so we don’t want to go backwards.”

This eagerness to move forwards raises the question: what was the cancer treatment access landscape like before the CDF? Barber grimly describes it as ‘the bad old days’.

Prior to the Fund’s introduction, patients who wanted access to a drug that was not available on the NHS had to make an individual funding request through their local health authority – or pay out of their own pocket.

The charity executive adds: “Many cancer patients were left wondering why, if their NHS doctor wished to prescribe a treatment that could extend or improve the quality of their lives, they were being forced to sell their homes or spend their life savings to fund the treatment.”

At the time of the fund’s launch, then-health secretary Andrew Lansley heralded it as a ‘crucial step forward’, characterising it as the foundation of “longer-term plans [which] will change the way we pay for drugs so that patients get better access to drugs and the NHS and the taxpayer get better value for money”.

These plans were expected to come to fruition in the form of a new pricing system, value-based pricing (VBP).

However, the government announced in November last year that VBP was to be essentially abandoned in favour of retaining the established Pharmaceutical Price Regulation Scheme (PPRS), albeit with new limits on the NHS’s drugs bill for the next five years. Many in the industry were disappointed by the decision, including Roche, the pharma giant that produces Avastin – the very drug Lisa credits with turning the tide on her bowel and liver cancer.

Stephen Cull, PR lead of the firm’s UK operations tells Pharmafocus: “VBP was a missed opportunity to rectify some of the pricing and reimbursement challenges in areas such as cancer.

“The government needs to ensure that its solution to these challenges put patients first, empowers clinicians and addresses divergence in UK clinical practice compared to the rest of the world.”

Beyond 2016

Cull like many in the industry, is supportive of the CDF saying that it has “put clinicians in the driving seat” – but as his comments suggest there is general agreement that the fund is not a sustainable solution.

Emlyn Samuel, policy manager at Cancer Research UK says: “The government needs to find long-term ways to fund all effective cancer treatments – be they drugs, radiotherapy or surgery – so that patients are given the best care possible.”

Samuel is concerned that a satisfactory evaluation has yet to be made of the CDF’s clinical benefit – and believes that such an assessment is critical to progress on the issue of access.

“It’s still unclear what impact the CDF has had on patient outcomes. We must collect better data on what drugs cancer patients across the UK need – including the impact of drugs made available through the CDF – to assess whether these drugs are working.”

Such data would put decision-makers in a much stronger position to consider the future of the fund. However, with finite funds in the public coffers and few substantial alternatives outlined, it remains difficult to predict what kind of provisions will be in place by 2016.

For the time being though, patients like Lisa are happy with the CDF as it is – and would have it extended indefinitely if possible.

Back on the Wirral, she is casting a cautious eye to the future. A fiction writer, she has already had two books published in the US: “That’s where I’m hoping to go – and I think it’s getting there. I would love to be a full-time, permanent writer.”

A year ago, the idea of career development was far from her thoughts. “I’m more positive about the future now,” she says. “I don’t think I would even be contemplating a future were it not for the treatment access I had through the CDF.”

With that, she departs to take the family pet out for a walk. She has plenty of errands to run that afternoon before her youngest gets home from school. All routine activities, perhaps, but after the year Lisa’s had, she’s happy to be getting on with normal life.

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On better prostate cancer diagnosis

Prostate cancer - credit Pulmonary Pathology Flickr

Prostate cancer under the microscope. (photo: Flickr / Pulmonary Pathology)

This article was originally published in the Pharmafocus supplement ‘Breaking into oncology’ in March 2014.

Addressing a room of academics and assorted journalists at the Royal Society in London, Prof Mark Emberton recalled a recent visit by one of the patients he treats at University College Hospital.

Over the past decade, this man had undergone five biopsies of his prostate in two different hospitals – and all five sets of results had come back negative for cancer. Confusingly, however, he had displayed gradually rising levels of PSA (Prostate-Specific Antigen, a biomarker for the condition) over the same period.

“We did imaging in the form of MRI,” Prof Emberton explained, “and found he’s got a large, locally-advanced prostate cancer tumour in the high part of his prostate – which is the part that’s never reached when you biopsy the gland from the rectum.”

Emberton concluded that between five and 10 years ago, the patient would have been curable, “but during that period, the cancer progressed, despite negative test results on five occasions. It was just for the application of a new test, an imaging test, which told us where the cancer was – and tomorrow, I will put a needle straight into his cancer so he can get his diagnosis and get on with treatment.”

New NICE guidelines

Emberton is a leading expert in early-stage prostate cancer research and was speaking at an event hosted by University College London (UCL) in mid-January, just one day after NICE released new guidance on diagnosis and treatment of the condition.

The respected urologist is a keen advocate of magnetic resonance imaging (MRI) testing early in the diagnosis process, and believes the guidelines – which recommend imaging only before a second biopsy – don’t go far enough in using this effective technology, and that NICE are “behind the curve on what is going on out there”.

He argued: “We’ve been lobbying hard and this is the first time that NICE has acknowledged that there is some role for [MRI in] determining location in men at risk of prostate cancer. And they are suggesting that imaging can be used, not at first diagnosis, but if your first biopsy is negative or if you are diagnosed and put on a surveillance programme, which is illogical to me.”

He went on: “If the test has utility, it has utility across the spectrum and the great opportunity here to use a widely available and non-invasive test is being missed in my view.”

In response, a spokesperson for NICE told Pharmafocus: “Existing evidence remains uncertain to the usefulness and cost-effectiveness of MRI in this [early] setting,” but added that the watchdog was monitoring the progress of a trial investigating this very question, currently lead by Emberton and due to wrap up in 2015.

The status quo

As it stands, if a man is found to have elevated PSA levels in a blood test, he will be submitted for a biopsy of his prostate. This is often conducted through the rectum and involves the extraction of small tissue samples with a needle.

Unsurprisingly, the procedure can be unpleasant and a local anaesthetic may be administered to minimise discomfort or pain. Infection can also be a risk when conducting a biopsy through this part of the body.

The tissue is then analysed for cancer cells but, according to Emberton, this test can be unsatisfactory as it is an essentially ‘random’ examination of the prostate.

He explained: “It’s equivalent, in a woman, of randomly putting a needle into the breast in the hope that you might find breast cancer.”

Furthermore, when doctors do find cancer cells, it’s not always clear if they’ve located an aggressive or indolent form which, if left alone, may not actually be life-threatening at all.

For Emberton, MRI offers a clinically effective, non-invasive alternative which is favoured by the majority of professionals. In short, ‘imaging is the future,’ he stated.

He continued: “If your MRI is negative, the negative predictive value for clinically significant disease today, reproduced in six studies and documented in systematic reviews, is in the order of 98 per cent.

“There aren’t many tests in medicine that have a negative predictive value of 98 per cent. So, if I have a normal MRI today, I would not want a biopsy – I would be happily discharged.”

Prostate cancer: not like the others 

In 2011, there were more than 40,000 new cases of prostate cancer in the UK, and nearly 11,000 deaths, according to figures from charity Cancer Research UK. It is the second deadliest cancer among British men, although its mortality rate has dropped 20% over the last two decades.

This falling death rate is ostensibly promising, but it may be attributable to the fact that thanks to increasingly widespread PSA testing, the disease is being detected more often now than in the past.

Prostate cancer is different from other forms of the disease because early diagnosis is not necessarily advantageous. As mentioned already, when detected, it is not always clear if the cancer is dangerous or not – this can only be determined by waiting and undergoing further tests down the line to see if the growth is progressing, and how fast.

This can be a risky option if the cancer does turn out to be aggressive, and many patients can find the experience highly stressful. The alternative – early surgery – is not much more appealing, however, because it involves the complete removal of the prostate.

“In prostate cancer, we are still in the bilateral mastectomy phase,” Emberton said.

“Every man has his prostate removed or irradiated at the whole gland level, irrespective of tumour size, risk, multiplicity or location.” This operation can have side effects such as incontinence and erectile dysfunction which can, in turn, have an impact on patients’ psychological and emotional wellbeing.

The treatment outlook with prostate cancer, then, is very different to every other form of the disease, where early intervention is key to improving survival chances. But this unintuitive approach can be difficult for doctors to justify to patients. “Communicating the problem of over-diagnosis is a massive challenge,” Emberton said. “As is communicating to somebody that they have a prostate cancer but we’re not going to do anything about it.”

He added that the scientific community needed to “come up with a test that identifies a clinically significant disease – and the beauty of MRI is that it does that. Needles don’t.”

MRI versus biopsy

MRI is a process of creating detailed internal images of the human body using radio waves and powerful magnetic fields. It is a non-invasive procedure which does not involve the use of radiation and is completely safe, except for patients with implants such as pacemakers.

In addition to its safety benefits, Emberton contended that an MRI is cheaper to conduct than a biopsy: “In itself an MRI scan on the NHS costs £200. The cost of a biopsy is currently, including histology, about £600.”

He was also keen to emphasise the added value of MRI in terms of efficiency: “The real cost [of biopsy] comes from identifying disease in a way that has no utility – and an estimated 50% of men diagnosed today globally are over-diagnosed. And that’s all waste and harm. So the cost of the default pathway is exceptionally high.”

Emberton also drew attention to the fact that a biopsy leads to bleeding in the gland which can compromise the effectiveness of a later MRI scan.

He argued that it is at an early stage that MRI has its maximum utility. “That’s where you can actually avoid a biopsy or where you can do a better biopsy. And I’m not quite sure why [NICE] haven’t gone that far.”

But in response, NICE indicated that wider provisions would need to be put in place before MRI is embraced to the extent that Emberton would like to see.

The body’s spokesperson commented: “Our view was that we needed to wait for the evidence before recommending what would be a major change in the diagnostic pathway, with significant implications for the capacity of MRI scanning, and for the training of radiologists and for quality assurance of such reporting across the country.”

Conclusion

The basic argument put forward by Emberton, and echoed by colleagues in attendance at UCL, is that there is a reliable and safe diagnostic tool for prostate cancer at our disposal, which NICE is not using to its full potential.

The healthcare watchdog has countered that additional evidence is required and external factors must be taken into consideration before earlier MRI use is recommended.

This is not the first time that accusations of excessive conservatism or institutional lethargy have been levelled at NICE – and perhaps such criticism is impossible for a healthcare regulator to avoid.

But Emberton made a compelling point when he claimed: “There is a big mismatch between what we [professional doctors] would ideally do for ourselves and what we are currently recommending to most of our patients” – an admission which may not fill observers, particularly those of whom are male, with the greatest confidence in NICE’s new prostate cancer guidelines.

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On Saif Bonar

Saif Bonar.

This article originally appeared on Eastlondonlines, February 2013.

Saif Bonar is a busy man. “I have a meeting at 1pm until 2:30. And another from 3 until 4. And another from 4 until 4:30. But I’m free after, until 6, if that’s any good,” reads one of his hastily written e-mails.

Bonar is the man behind the first ever fully crowdfunded theatre in the country. The space opens this spring in Matthews Yard, a café and co-working project he established last year in Croydon.

A quick scan through his CV offers further proof that Bonar is no stranger to taking the initiative. Ten years ago, he jumped straight into a masters programme in information and knowledge management at London Metropolitan University without A-levels or an undergraduate degree to his name.

“At first, the course manager said, ‘Well, listen, you can’t just do that.’ So I suggested she give me an assignment,” he explains. “If it was good enough, she could let me on. If it wasn’t, she’d save me seven thousand pounds. She said, ‘Well, that sounds quite sensible’ – and was obviously happy with what I wrote.”

Before that, he worked in a number of different industries at home and, for a period, in Russia. An entrepreneur at heart, the fluid, improvised nature of the Matthews Yard project seems a good fit for someone of his disposition.

“None of it was massively planned, to be honest,” Bonar admits. “Matthews Yard grew out of a hands-off approach, letting people mould the space to what they wanted it to be. So when we had the potential for more space, we decided that, given all the theatres in Croydon were closed, and people had already done productions in the café, we should build a performance space.”

A plan was in place, but finding the funds to see it through posed a problem. Third-party investment or a bank loan were both options, but would lead to less control over what was an essentially community-focused art project. So, instead of dealing with the suits, Bonar turned to the very people who would benefit from a new theatre in Croydon.

“We know almost everyone who donated money through Matthew’s Yard. They’re our customers, our members or they’ve been here before and they like the space.”

Bonar used Kickstarter to source the necessary capital. The fundraising website allows users to financially contribute to a wide variety of projects, usually in exchange for a gift of some kind.

“I had an interest in crowdfunding and crowdsourcing, so I always wanted an excuse to try it out. It seemed like the perfect opportunity. We did a lot of promotion, tapped into local media and made the reward side really generous. Anyone that put in ten pounds got a free brunch and that sort of thing.”

In the end, the project attracted £8,000 of funding.

In addition to his already significant workload, Bonar reveals that he has a few other projects in the pipeline, but stops short of explaining them at length, joking that he fears: “giving too much away”.

For the time being, though, Matthews Yard keeps him busy enough.

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On the unwanted Olympic legacy

Spitalfields trader Les Bobrow says his business continues to suffer as a result of the Olympic Games. (photo: Hugh McCafferty)

This article was co-written with Sophie Robinson-Tillett and originally appeared on Eastlondonlines, December 2012.

With only a week to go until Christmas, businesses across Hackney and Tower Hamlets are relying on festive sales to make up for a loss in custom of up to 70 per cent during this summer’s Olympic Games, a study by Eastlondonlines shows.

ELL approached nearly 60 randomly selected high street traders across its two host boroughs, Hackney and Tower Hamlets, and asked how their revenues were affected by the 2012 Games. 42 claimed to have suffered a downturn in profit during the Olympics – with almost a quarter still suffering from the impact of that revenue loss. Nine respondents said turnover benefited from the event, and eight felt there was no noticeable difference. As the end of the year approaches, many participants were concerned that their annual figures will be down on last year’s as a direct result of lost custom during this summer’s event.

In the ‘Olympics manifesto’ delivered by Boris Johnson in March, the mayor spoke of “lasting economic benefits for London”, promising a business boost which “all Londoners [could] benefit from, whether a taxi driver or a coffee shop owner.”

But it seems Johnson may have got it wrong, as Stoke Newington taxi company Premier Cars told ELL that the number of customers during the Games was “lower than expected, and the knock-on effect continued for several months after”. Many coffee shops across the two boroughs also said that regular custom was chased away by worries about overcrowding and traffic that never materialised, and because Olympic organisers promoted big shopping malls and corporate companies at the expense of smaller high street businesses.

The well-known Boisdale restaurant chain reported huge losses at their Canary Wharf venue during the Olympic period. “Approximately 70 per cent of regular customers were either on holiday, working from home or, in many cases, had moved to other offices further west to avoid what was perceived to be travel chaos in the east,” said deputy managing director, Nathan Evans.

For Les Bobrow, whose toy and fancy dress business Wood’n’Things has been a favourite at Spitalfields Market for over a decade, the Olympic period saw a 28 per cent loss in trade compared to last year. He told ELL that as soon as preparations to host the Games began, his shop started to take the hit.

“Six weeks prior to the Olympics, we had major disruptions on the rails,” he explained. “On the weekends, there was major engineering work in Liverpool Street Station to cope with the Olympics. I noticed a dramatic drop-off in trade then. I worked it out as a 28 per cent drop at the weekends, compared to last year.” Altogether in 2012, Brobow’s total annual revenue is 40 per cent less than the previous year.

Bobrow also said that traders had been encouraged to buy extra stock in preparation for the Games – stock that they couldn’t sell off. “They said there was going to be a massive boom in trade. I did get extra stock in and then general trade just dropped off. I don’t know anyone here [in Spitalfields] that’s up on last year.”

The advice to buy more stock than normal was provided by TfL. “Because of the difficulty with freight during the Games, we did recommend that businesses stockpile as one option – if they had the ability to,” a representative told Eastlondonlines.

But Bobrow said the advice was misguided and undermined by Olympic organisers who prioritised particular businesses: “We got the overall general impression that there would be thousands of people coming to London – which they did, but they didn’t come here. The Olympics was the best advertising campaign for Stratford, for Westfield. I’ve got a couple of friends in Stratford and they reckon their trade was six-fold. So, they done well out of it.”

According to VisitBritain, total overseas visitors to the UK fell in July and August 2012, compared to the previous year.

Business has picked up for Bobrow in the approach to Christmas, but he believed the knock-on effects of the summer downturn will be significant if things don’t improve a great deal before the New Year.

Although sentiments towards the Olympics were generally negative among the Spitalfields traders to whom ELL spoke, there were some who said the Games had been good for business. Keeley Byrne, owner of Kitty’s Closet, said she had enjoyed a boost in online sales since August. “[The Olympics] brought in extra visitors to the market. We’ve included them on our client database and increased internet sales.”

Up the road in Shoreditch, ELL discovered the largest area of increased trade across the two boroughs. International chains such as FiftyFiveDSL and New Era reported a positive impact on sales, along with smaller groups and independent businesses such as sister pubs The Queen of Hoxton and The Book Club, and coffee shop Shoreditch Grind.

The Book Club, on Leonard Street, sought to capitalise on the Games in true Hackney-style: by organising a pop-up venture in a nearby car park during the event. “On sunny days it was rammed,” said Freya Coote, PR manager for the venue. And the new customers have stuck around and kept sales up post-Games, she told ELL.

FiftyFiveDSL in Shoreditch’s pop-up mall, Boxpark, agreed that the impact of the Games had so far had a lasting positive impact. “There are definitely still more tourists in the area”, Jonathan Ramm, store manager, said.

A Hackney Council spokesperson told ELL that the council had “hosted national and international press as well as residents and visitors at its pop-up venue Hackney House, which acted as a showcase for the borough around Games time.

“Despite the London-wide trend of reduced trade during Games time some areas of Hackney, such as Shoreditch, saw an increase in business.”

According to the figures gathered by ELL, nearly three quarters of businesses surveyed reported a noticeable drop in sales over the course of the Games, suggesting those who benefited were in the minority and that many are still suffering from these losses – a problem likely to have been  exacerbated by the economic climate.

Many local businesses ELL spoke to across Hackney and Tower Hamlets said they see Christmas as the last chance to bring annual turnover back up and make amends after the sting of the Olympic summer.

Joanna De Guia, head of Victoria Park Business Association, said, “2012 was unexpectedly one of the hardest years we’ve ever had, as a direct result of the Olympics and the way they were handled. As a result, we are all desperately keeping our fingers crossed that Christmas will buck the trend and counterbalance the Olympic effect. We need people to please, please, please shop local and support local businesses who have had such a tough time because of this.”

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On Herman Ouseley

Herman Ouseley. (photo: Millwall FC)

This article originally appeared on Eastlondonlines, November 2012

This will go down in the history books as a momentous year for UK sport. Andy Murray cast off the weight of national expectation, clinching the US Open; Bradley Wiggins became the first British winner of the Tour de France; and, in case anybody has forgotten, Team GB did rather well for themselves at the Olympics.

Ironically though, for football – perhaps the nation’s most popular sporting export – it has been a year marked by conflict and controversy. The game’s news agenda over the last 12 months has been dominated by allegations of racist abuse by players, fans and even referees.

Among the many opinions voiced over the year, those of a former Catford College student have been some of the most quoted. Lord Herman Ouseley, the influential activist and life peer, was a key figure in the establishment of Kick It Out, one of the most prominent anti-discrimination campaigns in world football. As chairman of the organisation, he has spoken widely about recent developments.

Ouseley was back in Lewisham last week at the launch Equaliteam, a local organisation he helped develop. Unsurprisingly, football found a way into his speech. “It’s one of the most controversial areas where we hear anything said about race now. That’s become a focus that some people may not like but at least people are talking about it, at least they’re challenging it, at least we can see a reflection of the nastiness that still exists in society.”

Kick It Out came in for some criticism last month as its annual awareness week was boycotted by a number of black players unhappy with the lack of decisive action on racism in the game. But Ouseley has maintained that the FA and PFA are the true targets of dissent. Speaking to Eastlondonlines after his appearance in Lewisham, Ouseley defended the organisation’s track record.

“I think what we’ve got to do is look at the landscape, which has changed considerably since 1993. At that time, black people couldn’t go to football games because they were spat at, beaten up, abused – and black players were vilely abused. The families of black players couldn’t attend matches because of the abuse, so those players were on their own.

“That landscape has changed, though. Now there are hearings and sanctions and, although there has been some time lag, the FA has moved from lethargy and timidity on issues of racism to taking action.”

Speaking specifically about the t-shirt boycott, Ouseley was quick to characterise it as an instance of players using the campaign to voice dissatisfaction rather than an attack on the organisation itself.

He said: “Kick It Out’s greatest achievement is that players are expressing their grievances and those grievances are being accepted.”

One such grievance was expressed last month in Lewisham, when Bolton Wanderers striker Marvin Sordell complained that he and other teammates suffered racist abuse at the hands of Millwall supporters. The incident came to a resolution yesterday when the 13-year-old who was found to have been responsible delivered a written apology to Sordell. Millwall FC has banned the boy from games and offered him a place on an education programme.

Significantly, education has been a key feature of Ouseley’s campaigning work throughout his career. Originally from Guyana, he first came to Britain as a boy in the ‘50s. He grew up in Peckham, where racial tensions were high in the wake of the Second World War. Recalling his childhood at the Lewisham meeting, Ouseley spoke about the importance of education in tackling discrimination; using education not just for perpetrators of racism, but also for its victims.

“One of the saddest things about my life growing up in Peckham was not being called ‘wog’, ‘sambo’, ‘coon’ and all those things – when I saw other children smiling at me, I thought they were being friendly. It was when adults came to me and said, ‘We didn’t win the war for you people to come here and take our homes and our jobs.’

“I didn’t know the history of the Black and Asian contribution to the Allied forces during the great wars of the last century, how hundreds of thousands died in service for this country.

“It’s very important that we have a role in educating the population about themselves, about their history, about their heritage and about their contribution. Children should not feel that they don’t belong, that they have no value.”

Remarking on how Lewisham has changed over the decades, Ouseley is upbeat, describing it as a cosmopolitan borough that has enjoyed some good leadership over the years. He is under no impression, however, that the fight for equality is won. “Racism still exists, but in different forms. There are subtleties that have to be focussed on distinctly if you are to deal with those in a meaningful way.”

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On how not to cook shiso cheese chicken katsu

Shiso is definitely one of the best things I encountered in Japan. (photo: flickr.com/rieorie)

It’s been two months since I returned to Europe from Japan and so, somewhat inevitably, the rose-tinted glasses have well and truly taken over. Which isn’t to say that Kitakyushu requires said spectacles to be viewed in a positive light. Like all cities, it has its eyesores and its eye candy, its dingy dives and its hidden gems.

In the cosy grip of nostalgia, however, I long for rich pork broth ramen and all-you-can-eat cake buffets while conveniently forgetting aspects of the culinary landscape – such as the perplexing scarcity of reasonably-priced fruit and vegetables – that I used to curse on a daily basis.

Before I left, a colleague recommended that, if I ever missed Japan, I should embrace all of the great things at home that I couldn’t get in Asia. Go out and eat some cheese! (An elusive and expensive treat in the land of the rising sun). Go to the pub and enjoy a delicious pint of Guinness for less than six quid! Buy a nice sandwich (on wholemeal bread!!) for lunch!

While this has so far proven to be good advice, I recently decided to go the other way. I tried to recreate a delicacy only found in Japan in an attempt to prove that anything Japan could do, I could do better (or at least similarly). I made shiso cheese chicken katsu and I’d like to share the recipe with you.

You will need:
- Shiso leaves (12)
Shiso is available in most good Asian markets. It may be a little pricey but the flavour is distinctive – fresh and a little minty. Purple and green varieties are available and either will do.
- Cheese (about 80g)
Cheddar should do the job nicely here. Cut it into small chunks.
- Chicken breasts (2)
I went for some large, thick breasts but any cut that you can happily wrap around cheese and shiso will do.
- Flour (about 200g)
- Eggs (2, beaten)
- Breadcrumbs (about 100g)
Or panko, if you will.
- Oil, for shallow frying
- Mayonnaise
- Tonkatsu sauce
You can pick this up at Asian markets too. However, BBQ sauce works really well if you can’t find any. 

Directions:
1. Slice each chicken breast into thirds, width-wise, and then slice a pocket into each piece of chicken.
2. Take a chunk of cheese, wrap it up in two shiso leaves and cram it into a pocket. Don’t worry if bits of leaf or cheese poke out. Repeat for each piece of chicken.
3. Dunk a piece in the egg. Make sure it gets covered all over. Then dunk it in the flour. Then in the egg again! And finally in the breadcrumbs. Repeat until you have six chunky, cheesy, leafy, breadcrumby nuggets.
4. Get the oil nice and hot in a pan and shallow fry the chicken for 5-6 minutes on each side.
5. Leave the chicken to de-grease a bit on some kitchen roll.
6. Slap on some mayonnaise and tonkatsu sauce and enjoy!

If you’re after an authentic Japanese fried food experience, serve these katsu rolls with sticky rice, salad and tsukemono (pickled vegetables). In truth, though, they work well with any Western fried food companion.

As an endnote, I’d like to point out that when I finally sat down to enjoy the greasy fruits of my labour, I got a most unwelcome surprise. Well, actually, I was fine, but my girlfriend was unfortunate enough to bite into a rogue piece of chicken that I had incompetently failed to cook all the way through – on her first bite and all!

As she disposed of the offending katsu roll, I contentedly munched on its satisfactorily cooked brethren and got to thinking. Memories are powerful. They can make you sigh, shudder or involuntarily laugh out loud in a room full of strangers. But very often they can be deceptive and you always have to remember to appreciate what you’ve got because the katsu is always better cooked on the other side. (In my case, literally).

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On Micaela Braithwaite (or, making it as a video blogger in Japan)

Micaela, in a picture I did actually take… for a completely unrelated article.

This interview originally appeared in Fukuoka Now, July 2012.

Name
Micaela Braithwaite

Hometown
Kamloops, B.C., Canada.

Identity
Freelance new media specialist, video blogger

What does “freelance new media specialist” mean?
My main thing is blogging. I have a little bit of a popular YouTube following.

What kind of numbers are we talking here?
I believe about 64,000 subscribers and over 11 million views. That’s where the majority of my income comes from now.

That’s quite impressive, but how do you make money from that?
First you become a YouTube partner. Then you’re able to put advertisements on all the videos that you own the rights to. They can’t have any copyrighted material or any background music that you don’t own. So, as long as it’s 100% original content, and it’s getting a consistent amount of views, when you monetise it, you can make a good amount of money.

So you can make a reasonably comfortable living from that?
Yes, but I think I’m kind of lucky in the sense that it took a really long time – five years – to build up a following. And then only about 3 years ago, I started making money from it. So the first 2 years, I was just doing it because I enjoyed it. And then, the partner programme came into play and they were like, “Hey, you wanna make some money?” And I thought, “Oh, yeah, I’m going to be rich!” But for the first 6 months, I didn’t make anything. From there, it gradually started to grow.

And, if you don’t mind me asking, how much money DO you make?
I’m not really supposed to talk about how much we make but it’s enough that I don’t have to teach English anymore. I used to teach English, but then I quit. Blogging is my main thing but then on the side, people will see that and give me job opportunities like modelling or sponsorship.

Last year I went to Canada for ten days. That was paid for by the Canadian Tourism Commission in Tokyo. They said, “We’ll send you to Canada for 10 days and we’re going to pay you a lot of money – more than I make in two or three months of work – and all you have to do is continuously tweet and upload pictures, write one blog and make five videos during the 10 days.”

Yeah, I saw that on your blog. You went to places in Canada you had never been to before, right?
I had never been to these places but they were tourist attractions, like, we went to the north for two days and both nights we had to go out at two in the morning, in minus thirty degree weather, with our camera equipment and we had to take pictures of the northern lights. Which was absolutely gorgeous, but they were like, “We don’t know if they’ll show up to tonight, so you guys have to go out until you get it.” And so, we were all jet-lagged and exhausted but in the end it was a really awesome experience.

And you went with Japanese video blogger Jet Daisuke?
Yeah.

Did you feel like a tourist?
Yeah! People would say, “Who are you? Why are you here? You don’t look Japanese!” They were waiting for two bloggers from Japan and I was like, “Hi!”

What attracted you to blogging in the first place?
I started blogging because I was living in Kumamoto and I was 18 years old and my parents missed me terribly – my mom especially. She was always worried. She was was like, “I don’t know what Kumamoto is like. I don’t know what Japan is like. Are you OK? Is it dangerous?” and so the first video I ever made, I just got on my bicycle with my camera and rode around and kind of just recorded people on the street – like what people were doing, what I was doing, some shots of me and my friends. It was really amateur but the intention was to just show my parents where I live – it’s clean, the weather’s beautiful, here are my friends – they’re not crazy.

That video got featured on a blogging website and it got 20,000 hits overnight and I was really shocked. People were saying “Please make more” because at the time, YouTube wasn’t popular; it was a year old and there weren’t that many creators, especially in Japan. It didn’t even pick up in Japan until smart phones were introduced. So, I started planning things and I had so much fun. Everything was new and exciting and then to share it and for people to enjoy it was really rewarding. So I just kept doing it and I kept improving how I was making them and I think the quality has gone up a lot.

What kind of people make up your audience?
The audience has really shifted. It used to be North Americans mostly – and I was making videos for a North American audience. But last month, I was checking my stats and in the past 30 days, I had 400,000 hits from inside Japan. And the second most viewed country was America with 60,000. So, I’m now being viewed more in Japan than anywhere else in the world.

Have you started catering your videos accordingly?
Originally, I made Japanese videos because people in foreign countries were interested in Japan and learning Japanese. I always thought that if I was speaking Japanese, they’d be impressed. But now that more Japanese people are watching, I get requests like, “Can you make more videos in English – I like listening to you speaking English.” So, I try to keep it balanced.

Is it difficult to think of video topics that will engage both your Japanese and non-Japanese viewers?
Originally, my videos were for people overseas who were interested in Japan and still, for the most part, I try to aim my content towards them. But now it’s centred around things I find weird or things that happen in my daily life that I like to share because I guess I have the unique perspective of being a foreigner and there are some things I’m not used to. I made a video about toilets – y’know the ones in the ground – and how they freak me out. The foreign reaction was like, “Ew, that’s gross,” and the Japanese reaction was like, “Actually, I hate those too!” People like hearing people say something that they feel the same way about. I think we can bond over squat toilets, y’know!?

Absolutely. Sometimes your videos are a little more personal too, right?
Sometimes I’ll make more personal videos, like when I graduated from university, because if I didn’t have this group of people watching maybe I wouldn’t have pushed myself as hard to pull through and finish school and do all these things.

It’s a combination of personal stuff like that and the things that are meant to be entertaining. There’ll be stories and important information about what I do and what life is like here but I always try to make it informative and interesting and kind of humourous. I never want to make anything negative because I don’t want to spread negative information or negative energy, so I always try to keep it upbeat and keep it a little funny but still have a main point or a main message I’m trying to convey.

Do you ever have trouble with trolls?
I try my best not to look like someone who could take a beating with words. I try to be humble and not annoying [laughs]. It’s the annoying people that others always want to tear down – people who put themselves above everyone else. Y’know, I’ll get things where people say bad things, like I’ll get Japanese messages that say, “Kaere” – go home – and stuff. But most of the feedback I get back is really positive.

Because your material can sometimes be quite personal, is it ever difficult to draw the privacy boundary with viewers?
There are things I don’t like to talk about. Some people will ask what visa I’m on or they’ll be like, “How much money do you make?” Questions like that about money or personal things I’ll never say yes or no because it doesn’t really matter. But other than that, I don’t really mind if people know I went to Hiroshima last year. Things that I put up on YouTube, I’m usually OK with.

You’ve collaborated with other bloggers in a number of your videos. Is there a significant scene in Japan?
Oh yes, in Tokyo especially. Most of them are Japanese. Everyone who’s doing it as a job – we’re all kind of close-knit. When I go to Tokyo, we get together and we’ll meet and make plans to make videos together because it’s a way to share audiences and expose ourselves to new people. It can be really inspiring to get together with other people and sometimes very therapeutic to get together with people who get the same amount of certain comments, like, “Go home, white pig,” and stuff like that.

Is it really that bad?
Sometimes. Not as much anymore. It’s like 99% positive but then there’s always the one jerk who says things. It’s usually the same person. I’ll say, “This user said this to me,” and other people will be like, “Oh, they said that to me too!”

How do you deal with that?
It depends. If they’re really racist or they’re saying really disturbing things, I can block them. But we have a tolerance to a certain degree – people are entitled to their opinions too. Plus, when those people come and they’re looking for a fight, usually they’re coming again and again and again and that, in the end, kind of helps us because we earn one or two yen a visit. So you have to consider that [smiles].

How do you go about building up a following of 64,000?
It’s hard. Network. Basically be friendly. Don’t burn bridges. I watch a lot of younger people who are blogging and making enemies. They’ll start sending nasty messages to people who are doing better than them and, y’know, those people are the ones who are going to help you out.

It takes consistency and effort. Most of the time, I’m very critical about the videos I post. When I finish something, I’ll watch it back and if I feel like I’m bored just watching it, I’ll be like, “OK, I’ll just make something else tomorrow.” If I can look at a completed project and be like, “Yeah, that’s still kind of entertaining after seeing it so many times,” then I figure it’ll probably be interesting to people seeing it for the first time.

So, it’s good to be critical of your work, to upload consistently, to develop a relationship with the people who watch you. Try to not put yourself above people who watch your videos – because it’s not TV. YouTube, Facebook, Twitter – you need to use all of them to build a connection with the people watching you and that’s why they keep coming back. They’ll be like, “I wonder how she’s doing?” and they’ll come and check.

That sounds like a significant time investment.
Yes, that’s why I do it full-time now. When I was in school, it was really, really hard and I was probably only making one or two videos every month.

Career-wise, where are you going with this?
To be honest, this year I’ve been feeling that maybe it’s time to get a little more ambitious, to start branching into new, exciting things. I’ve been getting a few offers for TV. I don’t really know if I’m cut out for TV because I’ve always been working by myself. I think the problem that I have with TV is that in the interviews, we always kind of clash because they’ll be like, “I want you to be like this” and I’ll say “That’s not who I am, you’re just making a new character for me. You’re banking on my internet popularity but you’re trying to create someone who isn’t me.”

So, I’ve had a tough time reaching an agreement with people. I’m very thankful that they gave me opportunities – I just have to decide how I want to go forward.

Do you think it’s possible for a foreigner to be taken seriously as an entertainer in Japan?
No, not yet but maybe it will change. Ultimately, the thing that I’ve realised is that if you say, “I’m not going to be that foreigner – that kooky, wacky foreigner,” there are thousands of people in Japan who will. And at the end of the day, they’re getting the pay check and you’re not because you were too stubborn to change. Obviously there’s that inner struggle where it’s like “Is it OK to sell out?” But, at the end of the day you have to remember that, OK, TV is entertainment, so it doesn’t have to be me on that screen, but it’s just it would be nice if people would understand that everything that they see on TV is designed to entertain and not really a reflection of who everyone is.

Do you feel that foreigners are portrayed as…
As idiots?

Yeah.
Absolutely. They’re always the same character. In one audition I had for a major TV show, they told me, “Japan’s always looking for the next something that’s already been done.” So, they said, “You should sing enka, you should be an enka-singing gaijin, like Jero – you can be that, you can be the next Jero.” I’m like, “Why can’t I be the first Micaela? Nobody knows what that is!”

What happened with that interview?
I said “I’ll call you” and then never did. I just felt like it wasn’t for me anyway because that show was designed for discovering people and if I’d been discovered as the person they’d created for me, then I never would have been able to be myself – I would never have been able to change that character. It’s better to find people who have a better idea of who you are and who know how to present you.

Beyond blogging and television, you dabble in a bit of modelling too, right?
Yeah. I’m not cut out to be a super model – I get told to lose weight and I’m like, “Whatever.” I do running and stuff like that but I’m not going to kill myself. I did some local stuff for a magazine in Fukuoka called E-mill that’s coming out at the end of the month. We dressed up in kimonos. It was really fun.

You made a video recently about how much you like Fukuoka [embedded below].
Yeah, that was because I was getting job offers and people were like, “Are you going to move to Tokyo?” Or people didn’t realise I lived in Fukuoka and assumed I lived in Tokyo. Like, they’d ask me to come by the office for a meeting. I thought I had to make a video that got those people’s attention and say, “Hey, I live in Fukuoka.”

What are your favourite things about Fukuoka?
I love the summer here – people hate it because it’s so humid but I absolutely love the beaches. The people here are so chill compared to Tokyo. I go to Tokyo about once a month for work and every time I come back it’s like I can breathe a sigh of relief because everyone’s just kind of at their own pace and doing their own thing.

When I went to Tokyo before, I was always like, “I’m going to go shopping and I’m going to buy all these clothes,” but now Tenjin has H&M and Forever 21 and we have Hakata City, which has a million stores.There’s just so much to do here that I don’t feel the urge to go anywhere else. I just think it has the perfect balance of nature and countryside, plus the city which has everything you need. I love Fukuoka.

Good – so does Fukuoka Now! Finally, do you have any advice for aspiring bloggers?
The one thing I always say to people who want to blog or make videos on YouTube is don’t do it because you want recognition, don’t do it because you want money, don’t do it because you think you’re going to get famous on TV – do it because you enjoy it. Take the time to be critical of your work.

Most people will do it and then they don’t see results and they just give up, but if you enjoy it, keep at it and, as long as you’re sure that the things you’re making are interesting to other people, then an audience will come along. And if you’re good at maintaining a relationship with that audience, it will grow.

youtube.com/ciaela
ciaela.wordpress.com

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