A Christmas tale - Chris Woollams meets the head of Macmillan Cancer Support
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’I’m here to see Ciarn Devane’.
’Oh, he’s a lovely man’.
Thus spake the seraph (well actually the lady on reception) and forthwith appeared the man who leads a mighty throng of angels the Macmillan nurses
And I am one of the faithful I think Macmillan do a wondrous job for people touched by cancer.
I hadn’t quite followed a shining star in the heavens by camel, but it was just a few days before Christmas 2008 that I came by plane from Thailand to meet the new head of Macmillan Cancer Support. And this is no stable in Bethlehem, but a tower block on the South Bank.
I’m taken into the same open plan offices where 18 months before I had met his predecessor, Peter Cardy. I recall that I wrote up that interview but before the ink was dry I was informed that Mr. Cardy had left Macmillan - such a shame because I had agreed half a dozen things where Macmillan and CANCERactive could help each other do important things for cancer patients. Start again!
Ciarn arrives a little late. He’s not a man who would ever be flustered. He is the epitome of discipline. Disciplined in his thinking, self-disciplined in his answers. I’m reminded of a quote from Harold Wilson who famously said that he always went to interviews with three points in his head that he wanted to make. And whatever the question he answered with one of those points. One hour later and I am very clear on Ciarns three points.
Ciarn Devane is Irish and has a smile in his voice at all times during the hour I spend with him. You can’t help but like him. He knows exactly what his goals are for Macmillan. There are 2 million people living with cancer in the UK, and Macmillan wants to reach each one of them by 2010. (I reply that he should use icon more. We are in the process of doubling our print run to 60,000 so that everyone who is newly touched by cancer can have their own personal copy. This throws him but just for a split-second. He nods in agreement. I think.)
From 2010 his goals move on; they enlarge. When he has talked to everyone once, he wants to increase the range of the services and benefits Macmillan provides to each. He feels it is essential. For example, Macmillan research shows a higher incidence of people who once had cancer going into A&E with sudden illnesses like breathlessness. This may occur seven years after first cancer diagnosis. In fact the research shows that levels of ex-cancer patients in A&E are double those of people who never had cancer. Clearly once someone has had cancer they have a high need for ongoing support. Mr Devane feels there is much to do, much he can offer to the life of a person once they have been touched by cancer.
Individual Support
Ciarn is clear. Macmillan’s future role is SUPPORT for people touched by cancer. And that support may be practical, it may be emotional, it may be financial or nutritional.
’You see it is all about the individual’, he says. Why do I feel I am interviewing myself?
At CANCER active we have been telling people for six years that your cancer is as individual as you are. I tell Ciarn that Cancer Research have just caught up with this I’ve received a Press Release about tests for women with breast cancer so that they can be treated more as individuals with the right drugs for their specific state and cancer.
Ciarn is clear. He is talking about the state a cancer patient finds themselves in as a result of the cancer. This may be immediately, or ten years on. They may need practical support about the orthodox cancer treatments that could form their particular treatment programme - this is one of the reasons why Macmillan took in Cancerbackup. They may need physical support which the nurses can provide. They may need emotional support anything from counseling to psychotherapy. They may even need financial support or a benefits advisor Macmillan research has shown that people touched by cancer on average have to get by on just 50 per cent of their previous income.
It is all part of an ’Integrated approach’ where healthcare and socialcare meet. The ultimate aim is for every person living with cancer to be ’assessed’ to discover their needs be they employer support or nutritional advice and to then instigate a planning and follow-up approach to support them.
Under Ciarn, Macmillan helped launch the National Cancer Survivorship Initiative (NCSI) in partnership with the Department of Health. This initiative was devised to address the needs of ’ people living with, or beyond, a cancer diagnosis.
Macmillan’s aspirations are that all survivors should have equal access to high quality care and treatment to meet their medical, practical, emotional and financial needs, even years after their orthodox treatment has finished. Survivors should also have equal opportunity in the work place and in society at large. While patients should be supported to help themselves, Macmillan is are equally clear that Doctors have a huge role to play, for example in ’end of life’ situations and is working with them to make them more aware of key issues.
Cancerbackup
I ask him about the ’merger’ with Cancerbackup. I had received a press release saying the new organisation would be called Macmillan Cancerbackup. Ciarn is quite clear. The new organisation is Macmillan Cancer Support. It was a takeover, with Cancerbackup as a sub-brand to provide information of a clinical nature on orthodox cancer treatments.
’So Cancerbackup won’t be providing information on the benefits of exercise, or of Indian Head Massage?’ I tell him that when I interviewed the former CEO of ’old’ Cancerbackup they said they would not cover the complementary therapies because ’there was no research on them’. Ciarn is quite clear: the new Cancerbackup will help a patient clarify the orthodox treatment options.
Interestingly, in Summer of 2009, I put www.cancerbackup.com into my Google search engine and ended up on an alternative and complementary cancer site in the USA talking about B-17 and zeolite! Nowadays Cancerbackup UK is firmly part of brand macmillan.
And, as of November 1st 2008, the leaflets and literature they provide are free. Previously cancer centres such as Maggie’s, The Rainbow and others had to buy these from Cancer Backup in order to provide them free to patients. That has all ceased they are now free to the service provider. ’We can’t have a nurse worrying about how to find 200 when she has patients to care for’, Ciarn adds. Requests for leaflets immediately increased by 350 per cent!
Complementary Therapies
This leads us to talk of complementary therapies. I talk of the ’quack busters’, the self-styled experts who say that there are no benefits to, nor research on, complementary therapies. He will not be drawn. I say we have been attacked - indeed I have personally been attacked - but that the research is out there, even clinical trials in some cases. He won’t comment on that either, which I must say is very disappointing; but at least does agree with me that ’even if it is a placebo effect, so what? A benefit to the patient is a benefit, even if it is all in the mind’. I’m left wondering what his view (and indeed the official view of macmillan) is on complementary therapies; especially since many Macmillan centres offer such therapies.
I quiz him further: he has, after all, mentioned nutritional support for those who might need it. He replies with one of his three points. ’Macmillan is about meeting the individual needs of the patients’. I don’t think I got an answer.
He tells me that he is working directly with Professor Mike Richards, the NHS and the Government on the National Cancer Survivorship programme. We interviewed Mike Richards, the UK’s cancer Tsar, a few years back for icon. I sent along my top interviewer who reported that Mike would absolutely, categorically only think in terms of orthodox therapies the holy trinity of surgery, radiotherapy and chemotherapy. Nothing else of merit existed. ’No, I haven’t found him like that’, the smile-in-the voice said. ’You must have got him wrong’. (I’ve known our reporter Madeleine for six years and I can tell you she never gets anything wrong!)
But this is another aspect of Ciarn. I suppose it is all part of the self-discipline, the focus on clear goals. No matter whether I go off the record, talk personal anecdote or joke, he will not go off the script. And, quite simply, he does not criticise others in public.
Managing the after effects
I can tell that the Macmillan -Government linked initiative is important to him. It ’officialises’ his business focus. Clearly, there is a recognition emerging in Britain that, only rarely, can you expect to cure a cancer, despite what drugs companies and bodies such as Cancer Research UK have said in the past. I note that even the tone of some of the CRUK press releases has altered recently on this to ’survival equals life extension’, from twenty years of a ’survival equals cure’ stance.
I recall that we interviewed Professor Karol Sikora a couple of years ago and he said that in twenty years time people would not be dying from cancer but living with it in much the same way people live now with diabetes.
And if cancer bodies are less and less about curing cancer, Macmillan will seize the initiative and take the lead role in SUPPORTING those with the disease and its ’after effects’.
After effects? How quaint. From where I sit as editor of an information charity, I am bombarded with press releases from drugs companies telling me about the benefits of their latest wonder drug, with hardly a mention of a side-effect. But now we are going to call them after effects, as if they are nothing to do with the damage caused by drugs or radiotherapy, but somehow they are a natural progression of your cancer. It’s the cancer’s fault, not that dodgy CT scan you had or the radiotherapy that damaged your backbone!
At least now that side-effects have metamorphosed into ’after effects’ we have a new honesty. Macmillan do openly talk of treatment after effects, be they osteoporosis in prostate survivors or lung damage to breast cancer patients after radiotherapy. Macmillan live in the real world one where 20 per cent or more of treated patients have illnesses due to the orthodox treatment regimes. The issue isn’t to deny they exist or gloss over them. The issue is to face them head on and create a programme that supports the patient in their hour of need. What ever you call the problem!
Two million people are living with or beyond cancer in the UK. Macmillan is here to make sure all of them receive the help, support and care they need. The earthquake of cancer has happened to an individual. The least they can do is help manage the after effects and possible shock waves.
This thinking comes from a man himself touched by cancer. His wife, Katie, died of an aggressive sarcoma. He says he ’was lucky, if losing a loved one can ever be lucky.’ The treatment and care she received was excellent. And he believes everyone should be entitled to those same excellent standards. It is, though, not just an issue of equality whatever your race, creed or financial circumstance - but equality whatever your cancer. Ciarn is clear: people with rarer cancers should receive just the same levels of individual support as those with the bigger budgets like breast cancer.
This thinking does not just emanate from his loss, but is borne from his subsequent Masters Degree and change of life to become a ’consultant’ in business development. I know from my personal background, that the best businessmen take what a company is already good at, and build on to this, rather than mess with the original offer.
So too, here. Macmillan has always been about its wonderful nurses. And palliative care and helping people during the last stages of their lives will clearly remain a key part the core of the Macmillan focus of ’Support’. I tell Ciarn that I have recently received American clinical trial research that showed for two cancers, palliative care resulted in longer periods of survival than did the gold standard drugs. He nods. He won’t say he agrees, of course, because that is to criticise drugs, and Ciarn doesn’t publically criticise. He’s genuinely a lovely man, and anyway criticism is not disciplined to the script!
Understanding the trauma of cancer
So if Macmillan is to go from providing nurses and practical support, to showing an understanding of the wider trauma experienced by a cancer patient and providing emotion, and even financial support, how is the funding going? Only today on the front page of the paper is there a headline about credit crunch and financial hardship in charities. The smile confides, ’We’ve seen none of that so far’. A budget of 74 million in 2006 rose to 104 million last year and is ’on-course’ in 2009.
I opine that clarity is now appearing amongst the generic charities but then there are only a few of us left. If Cancer Research is about ’research’, and Macmillan is about ’support’, CANCERactive has its focus in ’empowerment’. We provide information whether it be on prevention where we adopt a precautionary principle (where there is expert research warning of danger we will tell you), or on complementary and alternative therapies, not just orthodox ones. As the previous head of Cancer Backup had said to me in criticism, ’At CANCERactive, you just lay out all the information, so people can pick and choose the bits they need’. Right on, lady!
I can tell Ciarn likes the word empowerment he uses it more and more after this point during our chat. Stay focused Ciarn: you are about ’support’ ’empowerment’ is our word!
Through new Cancerbackup he wants a better distribution of information (yes, that’s why we set up CANCERactive). And now he wants to empower people to make good decisions (this really is straight out of the CANCERactive mission statement). And he wants to maximise the quantity of life for a cancer survivor and the quality.
Mutual Support
But why aren’t Macmillan and CANCERactive doing more together? I mention that we even agreed with his predecessor to have features on Macmillan nurses in our magazine, Macmillan sponsored articles on the latest issues facing cancer patients, be they concerning emotional or financial support, and Macmillan were very interested in our icon information index which would allow a lady in Liverpool or a man in Manchester the opportunity to find a local acupuncturist or a local cranial osteopath. All of this co-operation was suddenly dropped by Macmillan. The smile, benign. I’ve gone off Mr Devanes script.
But I pursue this. Cancerbackup lists cancer charities that provide help to patients - CANCERactive is not mentioned. Anywhere! Despite us writing to them several times in years gone by.
Yet CANCERactive details research and even clinical trials on complementary therapies, surely we should be co-operating. CANCERactive is also active in Prevention, and this would greatly complement the more after diagnosis emphasis of Macmillan. We could use a portion of the magazine to help patients in their aftercare, their socialcare or with their after effects. (I always have ideas!)
Here is our contribution, an article in icon, happy to support Macmillan. After all actions speak louder than words.
Future Perfect
I’m walked to the door, the smile is still there. He comes to meet my wife. I leave with armfuls of literature. I have no doubt that cancer patients will receive more and more support; as more and more of them learn to live with a cancer, rather than die from it. I believe that, quite porobably, Macmillan will lead the Government’s efforts most likely being both the initiator and driver of them, with a cinsistency that is patient focussed. But with Governments, Health Departments, Doctors interests, big pharma, politics etc, etc. perhaps Im being naive.
I do hope that Macmillan Cancer Support can plough a furrow through all of this and be the focus of the reality. We surely would all applaud this well would you rather go and ask the NHS for help, or Macmillan? Would you rather have some impersonal Government/ NHS official planning your care and emotional support; or the focused and disciplined Mr. Ciarn Devane.
No contest. He’s a lovely man.
For more information visit www.macmillan.org.uk or call 0808 808 2020