Monthly Archives: October 2010

Weekend message for all my cyber cancer friends

I hope you have the same sense of humour as I have

This was sent to me by a friend in Italy.

The Internet is a marvellous thing, not least because I can blame this friend as I think he meant me to send it on – if I can understand the email correctly:
Confucius said the way to achieve inner peace is to finish all the things you have started.

So I looked around my house to see things I’d started and hadn’t finished – and  I finished off a

bottle of Merlot,  a bottle of Chardonnay, a bodle of Baileys,a butle of wum, a pockage of Prungles, tha mainder of bot Prozic and Valiuminun scriptins,  the res of the chesescke an a box a chocletz.

Yu haf no idr how bludy fablus I feel rite now.

Plaese sned dhis orn to dem yu fee ar in ned ov iennr pisss.

And I um nod as drink as peeple thunk I am.

Screening for cancer – is it good or bad?

“All screening programmes do harm; some also do good”

There has been talk recently of benefits, or otherwise, of having mammograms.

Many people are still looking for accurate information, so this paper might add to confusion, or perhaps clear up some questions.  Good luck!

At the recent ESMO Conference (European Society for Medical Oncology), Karsten Jørgensen, of the Nordic Cochrane Center in Copenhagen, talked about the perils derived by over-diagnosis with mammography screening.

Jorgensen opened his talk with a provokative quotation taken by the paper of JA Muir Gray and June Austoker, namely: “All screening programmes do harm; some also do good. The responsibility of the policy-maker is to decide which programmes do more good than harm at reasonable cost and then introduce them, once they are confident that the screening programme could and will reach the standard of quality required for success.

The ratio of benefit to harm is not, however, constant and this relationship demonstrates a shifting balance”1, and posed another similarly provokative question to the audience, namely whether mammography screening for breast cancer can be actually numbered among the programmes that also do good.

To start out, Jorgensen gave some examples of cases where over-diagnosis led to abandonment of the screening programmes: lung cancer with chest x-ray was abandoned as a screeening programme when 29-50 % more cases were found in the screened group. The same happened with prostate cancer screening with PSA (20-70 % extra cases in screened group) and screening for neuroblastoma in children with urine test: 100 % over-diagnosis in two independent trials. Not to talk about the final screening test: autopsy, where practically every single one of us is found to have thyroid lesions!

Two fundamental concepts need to be spelled out and properly defined for every screening programme that we undertake:

1) Over-diagnosis, defined as the phenomenon for which, if screening were detecting breast cancer that would otherwise not have been diagnosed, it would be expected that in controlled trials there would be a persistent excess number of breast cancers in the screened group compared with the control group (the definition is taken from the 1986 Forrest Report, which formed the basis for the breast cancer screening programme in the UK, and that can be read here.

2) Over-treatment: an obvious source of harm associated with any screening programme is unnecessary treatment of cancers that were not going to cause death or symptoms (from the 2003 IARC Handbooks of Cancer Prevention, Volume 7: Breast Cancer Screening, the electronic version can be found here.

As stressed by Jørgensen, “It’s not over-diagnosis the problem we need to tackle in breast cancer treatments, it is overtreatment! Think how you would explain to a woman that the surgery, radiotherapy or chemotherapy she underwent, together with all the worries and preoccupation that she and her family went through, were unnecessary? That is the real problem!”

The Nordic Cochrane Center (NCC), where Jorgensen works, is an independent research and information centre that is part of the Cochrane Collaboration (an international network of individuals and institutions committed to preparing and disseminating systematic reviews of the effects of health care). A review about breast cancer screening with mammography was compiled in 2009, and is available upon download here on their website. In this review, eight eligible trials were identified, and 600,000 women were included in the analyses. Three trials with adequate randomisation did not show a significant reduction in breast cancer mortality at 13 years (relative risk (RR) 0.90); four trials with suboptimal randomisation showed a significant reduction in breast cancer mortality with an RR of 0.75. Numbers of lumpectomies and mastectomies were significantly larger in the screened groups (RR 1.31, 95% CI 1.22 to 1.42) for the two adequately randomised trials that measured this outcome; the use of radiotherapy was similarly increased. The authors of the review, Peter Gotzsche and Margrethe Nielsen2, conclude that, although screening is likely to reduce breast cancer mortality, with a reasonable estimate of 15% reduction (corresponding to an absolute risk reduction of 0.05%), it also led to 30% over-diagnosis and overtreatment, or an absolute risk increase of 0.5%.

To put the results in other figures, this means that for every 2000 women invited for screening throughout ten years, one will have her life prolonged and ten healthy women, who would not have been diagnosed if there had not been screening, will be treated unnecessarily! Furthermore, more than two hundred women will go through psychological distress due to false positive results. Gotzsche and Nielsen conclude that it is thus not clear whether screening does more good than harm. Jørgensen agrees with them and, as he started out his talk with a provocative question, he concluded it with another thought-provoking message. He showed an old print campaign advertisement by the American Cancer Society, which reads: “If you haven’t had a mammogram, you need more than your breasts examined”, conveying therefore the message that women would be stupid if they did not undergo mammography screening. But, given current data, such a message needs to be seriously re-evaluated.

Further Screening

Once you have had cancer, or if you are concerned, over-50, etc. it is a good idea to do the simple Bowel Cancer screening test at home.  However, if you then need to get a Colonoscopy, and if you had polio as a child, or some other neurological or muscular conditions,  ask about anaesthesia.  When I phoned Charing Cross Hospital about this, the Nurse in charge pooh-poohed the suggestion, even when I told her about eminent hospitals abroad that have this as part of the procedure for anyone who had polio.  Her words were “we treat everyone the same”.  In other words, if you have a condition that it going to make it painful – tough.

She then said , “WE may decide not to give a sedative”.  No suggestion of consulting the patient as to what they want.

I wrote to Charing Cross to ask why this nurse wouldn’t even look up information- and so far no reply – two months later.  This barbaric type of care just has to be stamped out.  At least the nurse should have acknowledged she didn’t know anything about polio, but would go off and find out about it.

http://www.britishpolio.org

References

1. Gray JA and Austoker J (1998) Quality assurance in screening programmes Br Med Bull. 54(4) 983-92

2. Jørgensen KJ and Gøtzsche PC (2009) Overdiagnosis in publicly organised mammography screening programmes: systematic review of incidence trends BMJ 339:b2587.

Additional reading

Boer R, Warmerdam P, de Koning H, et al (1994) Extra incidence caused by mammographic screening Lancet 343(8903) 979.

Esserman L and Thompson I (2010) Solving the overdiagnosis dilemma J Natl Cancer Inst 102(9):582-3

Veronesi A and Serraino D (2009) Screening: is breast cancer overdiagnosed? Nat Rev Clin Oncol. 6(12):682-3

Welch HG and Black WC (2010) Overdiagnosis in cancer J Natl Cancer Inst 102(9):605-13

Kim Novak – another celebrity has breast cancer

Kim proves you are never too old for a mammogram

Hollywood film actress Kim Novak has been diagnosed with breast cancer.
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“It was caught early by a routine yearly mammogram and she   is undergoing treatment,” said her manager Sue Cameron.
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This shocking news will send out a strong warning to the
medical profession in many countries, who put an age cap
on mammograms for people under Kim’s age.
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Kim was aged 76 at diagnosis, and sadly this is a warning signal, and a wake-up  call to doctors who assure their patients  “you are too old to get breast cancer” at 70-plus.  At the recent Breakthrough Breast Cancer Westminster Fly-in, age at diagnosis was one of the items highlighted, and people were warned they should demand mammograms when well over 70  – not to abide by Government-imposed timescales.
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For women who think that after 70 they don’t need to bother any more about mammograms – as Kim has proven, you do need to have these check-ups, even if you are in the best of health.
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According to Sue Cameron, “all her doctors say she is in fantastic physical shape and should recover very well.”
But she is yet another person who disproves the theory that if you excersize and are slim, you avoid cancer.  T’aint so.
However, Kim’s treatment is expected to be minimal, suggesting she needs a lumpectomy and radiation – possibly
the new brachytherapy treatment.
Kim became a world favourite with her role in “Vertigo“,  with James Stewart, and produced by the Englishman Sir Alfred Hitchcock.  She also starred in  “Pal Joey” with Frank Sinatra, and “Picnic” starring William Holden.

In 1976 she married Dr. Robert Malloy, a veterinarian;  works out three times a week with a personal trainer, rides her horses daily on their ranch in Oregon, and helps raise horses and llamas.

What about you?

If you are over 70, make sure your doctor still sends you for a mammogram.  You have the right – so don’t take no for an answer.

What works for Gwyneth Paltrow could work for skins suffering from Osteoporosis drugs

Their Serums can be really helpful

I am feeling ecstatic – like Christmas has come early!

As usual, whenever I am put on a new drug, my skin lets me know that it objects, and I can’t say I blame it.

Currently I am being a guinea pig for osteoporosis drugs, and side effects of these drugs are what John  McEnroe would graphically describe as ‘the Pits’:   I couldn’t describe their side effects any better!  Yet again, after looking after it carefully, brillo pad skin is rife on my face.

But this morning, when moaning away at my awful skin, I discover a bottle of iS Clinical’s Poly-Vitamin Serum, which I had stored away for just such an emergency, and forgotten.  So out it came, I’ve already used it, and keep on touching my skin to feel the difference it is making.

This is a hero product, and I use it to counter drug side effects.  As it was developed expressly for cancer patients, and clinically trialled on them, it knows its stuff. I also have a bottle of the sister product from iS Clinical, Body Complex for the skin, which keeps rough patches at bay.

Now, I can’t say I am reconciled to the latest drug – but at least it is more bearable!

This week I was at Breakthrough’s Westminster Fly-in and one of the speakers was describing personalised medicine (see article under latest news).   This is the Holy Grail, which theoretically will stop us suffering so much from side effects, but heaven knows then we will be able to take advantage of this.

Anyway, in the meantime you can get iS Clinical products online, from the clinic that offers the Fire and Ice facial that Gwyneth Paltrow uses.  See:  http://healthspanews.com/fire-and-ice/

More information and to order:  http://www.mbnsclinic.co.uk/

MBNS Clinic, 57 North Street, Thame, Oxon, OX9 3BH

Westminster Fly-in

Westminster bursts with Pink!

Swopping her lab coat for a smart yellow jacket, Prof. Clare Isacke gave a fascinating and pertinent after-dinner speech to the assembled delegates to the Westminster Fly-in.
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As Deputy Director of the Breakthrough Breast Cancer Research Centre in London, Clare was the best person to update delegates on recent discoveries.  She talked about what she and her team are up to,  and  said the main focus of her laboratory’s work is on the spread of cancer from the breast to other sites in the body (the process known as metastasis).  Her team work  to achieve a much better understanding ofProfessor Clare Isacke

  • how cancers acquire the ability to grow into surrounding healthy tissue, and then spread around the body.
  • They then use this data to identify possible ways to prevent cancers from doing this.
  • And finally they hope to translate this information to develop new treatment options for breast cancer patients.

Speaking passionately and with great insight, she likened treating cancer to travelling on the underground, “the challenge is to find patients that can be treated by certain drugs”.  One sensed how frustrating it is for her and her team,  the number of dark tunnels that must crop up along the way.  But as she said,  “science underpins breast cancer survival improvement.  If we hadn’t invested in science we wouldn’t have got where we are now”.

Incidentally she must like bright colours – when not in the lab. she can be seen in a bright pink jump suit, her team uniform for Breakthrough’s Booby Birds, who so far have sky dived their way to raise a record £300,000.

Down to business

The next day, after all the Breakthrough members had been photographed in the distinctive shocking pink tee-shirts (see photos above and below), it was down to business.  The Breakthrough team do a fantastic job of supporting their networking members, and all morning a procession of MPs dutifully trotted over from Parliament to 1, Great George Street.  The building belongs to the Institution of Civil Engineers, and is just the right venue when you want to impress your MP.

With looks of determination on their faces, everyone waited in the impressive foyer for their MP, then whisked them off to brief them on what was required for better breast cancer treatment in their constituency.  The interesting thing to watch was the way that, after their meetings, instead of dashing back to the House of Commons, many MPs were interested enough to stay, chat to others or even sit in on one of the many top class talks.

Politicians put aside rivalries to campaign for better cancer care

One of those who stayed to address the meeting was Steve Brine, the young and energetic chairman of The All Party Parliamentary Group on Cancer (APPGC).

Calling cancer “this XXXXXXXX disease!”, he has pledged to support Breakthrough’s Touch, Look, Check breast awareness campaign.  Commenting on the way the APPGC works together, he said it is the biggest parliamentary group after the All-party beer group, who had also held their meeting in Great George Street.  “As a member I was forced to go along to this.”

He is a devoted to helping cancer patients, having spoken at Breast Cancer Care’s event the week before, and his speech showed that he is alive to the problems faced by survivors.  One good point;  he knows he has the support of the Prime Minister, who told him “go in there and blow away the cobwebs”.  And he mentioned his constituency is Winchester, with its massive watercress beds.  He is keeping a beady eye on the research into how this plant can help cancer patients.

Sponsors

Pfizer and Roche had sponsored this impressive meeting, and without their support it would not have been possible.  One could have wished they hadn’t been quite so self-effacing;  after Clare’s talk it would have been interesting to talk to their scientists on the work they are doing for the future.

Meeting the scientists might answer some queries as to why drugs are so expensive;  another speaker had mentioned that it can cost £2 BILLION to develop a drug – and there was no figure for how much it costs for all those drugs that fall by the wayside before development.

Social Media

The day was about giving us the tools to get out there and campaign effectively, and Social media such as Twitter, Facebook etc. are very effective tools.  Kate Cooper from http://www.digitaltrainingcompany.com was there to show us the ropes, and produced a very effective Social Media Toolkit which I am looking at now – and intend to use to ‘up’ my skills.

Recurring Themes

When Jeremy Hughes,  CEO, opened the meeting, he mentioned again the theme which has carried through all the cancer meetings this month – NHS v. European treatment.  We keep on hearing how much better treatment is in Europe, but anyone who hasn’t been lucky enough to be treated in Europe must be wondering what all the fuss is about.  Perhaps next year we could have some European Oncologists come to talk to us?  On second thoughts – perhaps best not;  we could get very jealous!

But another theme was the post-code lottery, and also how Breakthrough members should campaign to ensure all 70 diagnostic units offer digital mammography to those who want it – not just those who fall within the selected age group.   So far only ten out of the units are all-digital.

Julia Wilson gave a fascinating talk on Personalised Medicine.   Currently between 30 – 70% of patients respond to drugs, leaving many with horrible side effects and wondering if it was all worth it.  Soon, it will be possible for everybody to have access to monitoring, which will be able to predict what type of response we may have to drugs.

Afterwards we spoke about Dr. James Mackay, the Medical Genetic Oncologist who practices from 108, Harley Street, and is at the forefront of personalised medicine.  At the moment he is the only person I know of who advises in this field.  But with most US cancer hospitals starting to offer personalised medicine, this is for the future – and not such a distant future if Julia has her way.

The White Paper and its requirements raised a lot of discussion.  As Maggie Alexander, Breakthrough’s Policy Director said, “this (paper) raises a lot of questions”.  One of the key themes running through the paper is patient involvement, but one wonders if every patient actually wants to be involved?  How can the average patient know who will be the best consultant to treat them, etc?

Commenting on the upheaval currently caused by the White Paper, Maggie said, “no sooner do we get to understand the changes proposed in one report” – than we have a change yet again.  On our discussion table we all wondered how GPs were going to find the time to deal with the changes, and fill out all the forms for commissioning that previously were dealt with by the soon-to-be-redundant PCTs.

What was aired in discussions
The mood around the tables echoed one member in our group, talking about the White Paper, who said “this seems fraught with problems”.
  • This bought up the issue of QOFs (which are the means of paying for services from central funds), and the fact that cancer patients are allocated on the scale of 6 QOFs – yet those with diabetes, dementia, etc.  are allocated 90 QOFs.  It didn’t take a genius to realise that doctors with heavy surgery overheads would spend more time on training to deal with the diseases that allocated higher QOFs.
  • And again there was comment about how patients should be involved with training.   Currently many hospitals use actors for exams, but how much better it would be to have patients.  There must be many actors who are also patients, and who would welcome the fee that ‘ordinary’ actors receive.
  • NHS Websites came in for criticism, especially those on Social Care and survivorship.  As one member said, “it is difficult to comment via their website – and they should adopt a better approach to involving patients.
  • Overall, members expressed concerns over the still existing post-code lottery.  Regional variations could mean GPs placing – say – means and treatment for diabetics above those for cancer patients in importance.
  • Another thing to watch out for – a member pointed out there was no mention of nurses they could find in the White Paper – so those who are lucky enough to have a good one should campaign hard to keep them.
  • There was a demand for statistics on how many Secondary Breast Cancer Patients there are in UK overall.  Without accurate figures it is difficult to challenge why there are only 19 Secondary BCNs in the whole of the UK.
  • GPs need to be trained NOT to send away younger patients who suspect they may have Breast Cancer.

Wrapping up the event, Nicole Reece, a patient, gave a very strong message that patients should be involved more – there was enormous strength in the first-person experience.

Macmillan hosts lively conference

Macmillan hosts Cancer Voices Conference

160 cancer survivors recently met at a Gatwick Hotel, and talked!

I often wonder why the organisers bother to invite speakers, as we always have so much to say when we meet up – but when they managed to get us to shut up there was an excellent programme to listen to and watch.

One of the speakers was Giles Long, MBE, seen here on a victory parade, who bought  a very interesting conference  to a resounding end.

So what did we talk about?

Summary Care Record (SCR)

For me, the most interesting session was on the SCR.  I only went in to the room because the session I had booked was cancelled, but the presenters, Andy Carr and Steph Peart, were informative, interesting, had a lively sense of humour, were honest and totally won me over explaining exactly what the SCR was all about.

Andy explained that the data the SCR would hold would contain

  • DOB
  • details of my medication
  • any allergies.

Anything else that I thought necessary to know could also be included, but nothing I did not approve would be allowed to be included.

The SCR is an electronic record that will be freely available to medical staff all over Britain, if they need to know what drugs we are on.  Theoretically if we are injured and unconscious in an accident, everyone from Ambulance staff onwards during our treatment path will be able to access this information.

Nothing can be recorded WITHOUT our permission.

NOTHING that we don’t want to be recorded will be recorded on our SCR.

Three months ago I had opted out. Our local hospital’s IT system is so bad you have to check your hospital prescriptions very, very carefully, and the thought of relying on a similar NHS IT system was frightening.

Now, I am re-thinking.

So what will/can be included?

  1. Basic details as mentioned above
  2. Drugs/medication I am on, and quantities
  3. Any medical history I want included  (diseases, conditions that might affect treatment, previous operations etc. but only what I choose to have included)
  4. Way to treat me e.g. if I have had a certain cancer and need to be laid in the recovery position, when unconscious
  5. And anything else I think important

1and 2 are mandatory;  3 – 5 and anything else will be up to me.

I think best way to comment on how good was the session is to say that I will be contacting my NHS GP to say that I DO want to be on the register.

One word of warning.  Just about every wage earner in Britain contributes around £2,000 pp to taxes that fund the NHS.  Yet in typical NHS ‘dog in manger’ attitude, if you only have a private GP, we were told they aren’t being  informed about this – even though private patients pay their taxes too.

Survivorship

We had a very user-involving workshop, and I felt sorry for the presenters, Sonya Peart and Noeline Young.  After explaining where the Survivorship initiative has got to, they gave every table in the Workshop copies of forms to look at, and asked us to comment.  Comments were uniformly bad, and at the end of the session these forms  had been universally panned.

Survivorship had been a recurring them throughout the speeches in other sessions, and was at the top of everyone’s agenda.  Yet the NHS initiative grinds along, involving ‘consultants’ who can write these questionnaires, but very little involvement from cancer survivors.  As one delegate said, “we are invited along to tick the boxes, but because we aren’t paid, they are not going to listen to what we say”.

Involving Volunteers – and paying them

I got the feeling that everyone in the audience had volunteered, and we had inspiring talks and comments from those who had given up their time to fund raise enormous amounts.   But in the current economic crisis, household bills such as food and fuel are rising rapidly, and survivors aren’t able to give as much time as they used.

In one session we were talking about using Patients as Advocates, and a delegate asked “why can’t survivors with acting skills be employed for medical exams, instead of actors?”  Any actor would work to the usual payment structure, so it wouldn’t cost any more to employ survivors, yet trainees would get a much more realistic examination, and survivors could feel they are being helpful, and get a fee to help with fuel and other bills!

Perhaps Macmillan nurses in the Community across Britain could report back on which hospitals have these ‘live’ exams, and Macmillan could write to the authorities to suggest this?

In the same session, another delegate had suggested that whilst he was having radiotherapy, he video-d  himself.  This video would then be used for training staff and induction before sessions for patients.  There must be lots more survivors who have experience as professional photographers, who would be able to offer this.  Again, this could be something the photographers amongst us could suggest to local Macmillan organisers.  Each NHS hospital has funds available for setting up this type of information, but so often it is outside companies with no experience of cancer who do the filming – and get the fee!

As a journalist I know that these videos and CDs flood my inbox;  most are produced by commercial companies, paid for by drug companies, PCTs, Trusts, Hospitals etc.  They have budgets – so get on to them and suggest yourselves!

The conference ended with a fascinating speech from Giles Long, MBE, a Paralympic Gold Medalist.  After cancer as a teenager, he got on with life, won sporting medals, and now talks to companies and groups about his experiences.

Giles reminded me that I put up a little story about the Iditarod dog sled race that runs across Alaska every March for ten days.  This year the favourite was a cancer survivor, and one of major women competitors had had a double mastectomy, and kitted her 16-dog team in pink bootees to celebrate survivorship.  The dogs aren’t sissy, but running 1000 miles on icy track cuts up their pads.

Before I left for the conference I had looked at the web stats (it’s fun to see which new countries are coming online – this month it was Trinidad and Tobago, Angola and Kazakstan).  And, six months later, people are still hitting the Iditarod story telling about cancer survivor Lance Mackay’s record win.

I am looking at increasing coverage next year and trying to involve teenage and children’s cancer charities.  Sport and cancer make interesting and inspiring  stories!

Venue:  am sure The Gatwick Hilton cost a fortune, because of the location.  The staff were excellent, but there was talk of massive overcharging if you used the room telephone, rooms not ready until late in the afternoon although people check out from 5 am as it is an airport hotel, problems with lights and heating in the rooms, etc.  Perhaps next year Macmillan could analyse travel expenses for delegates, and get some clever logician to work out where in Britain would be cheapest for train costs, and book into a country venue.  I know York is the easiest place to reach by train from venues in UK – but don’t know how many delegates come from north of Watford.

Breast Cancer Care make their mark

BREAST

CANCER

CARE

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CALL ATTENTION TO

SECONDARY BREAST

CANCER WITH A LARGE

QUESTION MARK

When the girls at Breast Cancer Care (BBC)  get  going, they come up with bright ideas – such as this huge  question mark that met MPs  on their way to Parliament.

Idea was to highlight lack of knowledge of numbers with secondary breast cancer – hence those with  this condition often have poor care.

This month, as I’m sure you will have noticed, is Breast Cancer Awareness Month. As part of this, Breast Cancer Care is spearheading the first ever Secondary Breast Cancer Awareness Day.

The day was about raising awareness and promoting Breast Cancer Care’s

Spotlight on Secondary Breast Cancer Campaign.

First objective is to call on the government to record accurately the number of people affected by secondary breast cancer in the UK.

There are no statistics that say how many now have this.  No-one has even done the simplest of surveys.  All we do know is that there are only 19 Secondary Breast Cancer Nurses to look after those with this devastating diagnosis;  these nurses are spread across the whole of the UK – very, very thinly.  Chances of a Secondary Breast Cancer (SBC) actually being looked after by one of these essential professionals is almost minimal.

What is known is that of those with SBC,  many are neglected, sent to the back of the queue, ignored etc.  Whilst most people are familiar with the implications of having breast cancer,  many people, including nurses,  are unaware of what it means to have SBC.

Secondary breast cancer occurs when breast cancer cells spread from the first, primary tumour in the breast to another distant part of your body via the bloodstream or lymphatic system. It can’t be cured, but it can be controlled, sometimes for a number of years. BCC want more people to understand what it can be like to live with secondary breast cancer, and to make sure that the right support is there for anyone affected.

What’s planned

The girls (and some men) at BCC aim to bring SBC issues to the Government’s attention, and as a first shot they invited a group of women with SBC to meet up with a powerful group of really committed MPs from the All Party Parliamentary Group on Breast Cancer.  This is one of the best-attended groups in Parliament, and during the excellent and informative speeches from MPs such as Steve Brine.  Annette Brooke, wetc. one heard ‘old-fashioned’ parliamentary expertise being focussed for constituent’s good.

It is rare to meet up with an MP today who has really studied a knotty problem, but those who spoke at the meeting really knew their stuff.    They spoke movingly and succinctly about how cancer problems had affected them, and were full of very sensible suggestions as to how SBC and its lack of suitable care could be effectively bought to the Government’s attention.

It didn’t hurt to have Andy Burnham (ex-health Minister in last Government) get involved.  Constantly quoting from the Briefing notes sent to him by BCC, he really knew his stuff.  Members of his family had had cancer, and even though he is now in Opposition, and no longer has health in his brief, he was still campaigning for better detection rates.  Musing about this, he said that his party (Labour) had wanted to bring down waiting times for screening to one week – bringing us up to many European countries’ rate.

He made a very strong point that one good thing about treatment in Europe is that patients can usually go straight to a Consultant if they wish.  In most cases there is no need to wait for a letter from the GP, which can hold up action.  There, you are assumed to have a brain, and if you decide to go straight to a Consultant – you can do this.  One way the NHS could save money would be to scrap this pointless ‘you need a GP’s referral letter’ system, if it is not needed.

But what came over well was that here was a politician who had passionately believed in his brief, and was strong enough to stand up and admit “we hadn’t done very well” in some instances.  Although he had his leg pulled by the sponsor of the meeting, Lord Janner.  As Greville Janner, he had been an MP for 27 years, and laughingly told the audience that this was probably the first time Burnham had answered questions!

He was fully in support of Steve Brine, MP,who  chairs the All Party Group made up of MPs from all over the house, Conservative, Lib Dem, Labour etc.  Brine has tabled an Early Day Motion  number 771) on “this House recognises the need to collect accurate statistics on the number of people diagnosed with secondary, metastatic, breast cancer; congratulates Breast Cancer Care onits work to raise awareness of and improve treatment for people with secondary breast cancer; and welcomes the first ever Secondary Breast Cancer Awareness Day on 13 October 2010.

So what can YOU do  next?

It is every cancer survivors’ dread that they develop a secondary cancer;  to many, this dread has become reality.  So we can all do our bit to get better care for those for whom this happens.

  1. Ask your MP to support Steve Brine’s Early Day Motion
  2. Ask your local cancer hospital if they have a Secondary Breast Care specialist nures – and if not, why not?

This is the ideal time to do this, as the Government is determined to get cancer care right, and a good shove in the right direction will make them think.

Way Forward

The audience were composed of bright, articulate women – and a few men.  When Burnham stressed that early detection was vital, one commented on the current scrappy, photocopied letter that was sent out with a screening appointment.  She suggested that instead this should be in the form of a well-presented letter, inviting women to ‘come and meet the team’ over a cup of coffee – and have a mammogram.

And everyone was urged to take the two steps above – voices can be a strong campaigning tool.

www.breastcancercare.org.uk

If you are having trouble getting back to work

Some pointers for breaking through brick walls

Macmillan is involved in discussions around changing the law to make it illegal for employers to discriminate against cancer patients.  The idea is good, but they need to involve representatives from Unions, ACAS, HR Depts., Employers, Institute of Personnel Directors, etc. at the planning stages, not just to lend their support at the finish.

Why?  Because we all want to get back to work – but if we are ‘shoehorned’ back into the workforce, this will only cause resentment amongst colleagues; employers might not be too happy either.  Forget about the days of the big bad employer;  some still exist, but the majority of British companies are SMEs (small and medium enterprises) who may employ less than ten people.

So before you demand your old job back – it might help

1.  To think if your old company has got the funding to support a part-time worker?

  • Will they mind if you constantly have to take time off for hospital visits?
  • Take an hour off each afternoon for a rest?
  • Possibly need to stay in hospital for treatment?

2.  Your old workmates have probably been incredibly supportive, telling you they can’t wait for you to get back  to work – but things might change if they see you

  • Constantly taking time off for which they have to cover
  • See you taking a rest every afternoon – when they think they are just as tired
  • Resent that you are given so much help, when they have a sick child or parent to look after and would love some time off.

In the States, they are considering legislation on the same lines, but there they are more practical.  Some of the suggestions are that the returning employees offer to take a pro-rata cut in salary, until they are able to resume full-time working.  And to have an official meeting with bosses and colleagues, explain approx. how much time you expect to have to take off, even give a calendar of dates if you know them.  But to be as open and forthcoming as possible with fellow workers, even if you don’t want to talk about it.

So this change in law, to benefit us in every way, needs a very sensitive approach.  And more involvement from ‘the other side’, who will be wanting to help cancer patients, but also face the reality of favouring one employee over another, how to arrange cover so work for the rest doesn’t suffer, and in these dreadful ‘credit crunch’ days, have to face bank managers and shareholders, who have invested in a company and want everyone working to their maximum hours.

Getting work

There ae many online companies, who hire people to work from home on websites.  This is NOT the type of work that pays a few pounds for a week’s work – this is paid sensibly, but enables you to choose the hours you want to work.  Not ideal for everyone, but if you have the skills and are prepared to be indoors – they could provide a life-line.

But I don’t have time to go through all the hoops to set this up – it needs a charity to do this.

When I did get on to the National Cancer Survivorship Initiative,  I asked why the NHS hadn’t involved those with cancer?  Back came a PC answer that they weren’t allowed to ask if someone had had cancer, or to discriminate in our favour.

This is nonsense.

Equality legislation explicitly permits ‘more favourable treatment’ of disabled people (S. 13(3) of the 2010 Equality Act) and this means that it’s perfectly permissible to target job opportunities/job creation at people living with cancer.

Currently the Department of Health is silent, hasn’t replied to my email asking why they don’t employ people who have had cancer as paid Consultants for suitable jobs, and has stone-walled every attempt I have made to find out how we get on this highly secret list of approved Consultants.  The old definition of a Consultant (the way the Government employs them) is, ‘ employing someone to tell you what you know’.

There has been a lot in the media recently about the amount these part-time employees cost the NHS, but where it would seem sensible to employ them – we are frozen out of this lucrative employment opportunity.  However, charities that keep a list of volunteers often have a basic CV in their database – so they could alert us to possible paid work when it involves cancer and the NHS.  And currently there are a massive amount of ‘initiatives’ going the rounds for which I am sure there are an army of consultants beavering away setting these up, writing reports, etc.

The Good News

Look under events;  there is an one on 29th October that is paying a small honorarium.  This is a start, and let’s hope more follow.

Then the charity RADAR (Royal Association for Disability Rights) is a group of over 900 disability charities and some individuals.  Whilst I am writing this, they are holding their AGM to discuss ‘The Equality Act 2010 and Health & Social Care – is equality for disabled people being strengthened or weakened?’

Public Affairs Manager Marije Davidson says their mission is “a fair and equal society in which human difference is seen as a strength. To achieve our aims of full and equal citizenship for all disabled people we work closely with a wide range of partners across the private, public and voluntary sector.  We shine a light on good practice on disability equality and inclusion, so that it may be replicated.  And we challenge violations of disabled people’s human rights to dignity, freedom, choice, control, equality and participation, helping get laws changed and showing how disabled people can be involved in creating solutions.

What to do if you think you are being treated unfairly

Ask your MP to write to the Permanent Secretary of the Department of Health  (Una O’Brien).  However much you want to write direct, letters from the public get answered by a lowly desk officer.  But a Minister HAS to reply to an MP.

Marije suggests you mention that RADAR, the largest pan-impairment campaigning organisation in the UK, supports involvement of people with lived experiences in policy planning and service development – with effective involvement from the beginning, organisations are more likely to get policy planning and service development right; however effective involvement also means valuing people for their contribution.  Marije says you may find this guide useful: http://www.dotheduty.org/files/Involving_disabled_people.pdf

As she says, most people living with ill-health, injury or disability, with the right support and flexibility, can work.

But cancer patients aren’t getting this, even when they could be usefully employed instead of consultants, PR companies, etc. by the charities they support.

You may also find RADAR’s report ‘Supporting Sustainable Careers’ useful – as well as their  Manifesto, which you can also find on  http://www.radar.org.uk/radarwebsite/tabid/277/default.aspx ; and you can find Supporting Sustainable Careers is here: http://www.radar.org.uk/radarwebsite/RadarFiles/publications/Supporting%20Sustainable%20Careers,%20July%202010%20%28low-res%29.pdf.

But if you find that you just can’t face going back to full-time work – you might contact your local Job Centre.  Think about what type of part-time work you might like to change to, and see what they can offer.  Unless this affects you benefits, don’t think about the low salary you may be offered;  treat this as a learning curve to discover what’s out there.  Once you have a bit of experience you will be better armed to go for a better paid position.

And good luck!

Top US doctor recommends yoga to patients

Yoga is now prescribed by top doctors

Each year ASCO (American Society of Clinical Oncology) holds one of the most important cancer conferences in the world.

Each year a top doctor is asked what Practice changes will you make based on presentations at ASCO?

There was a great deal of discussion about the benefits of yoga, and it is worthwhile noting that

Dr. Jeffrey Kirshner, MD,  was this year’s doctor who was asked to list

10 Practice Changes I Will Make Based on Presentations at the 2010 ASCO Meeting

Dr. Kirshner is Partner and Director of Research, Hematology Oncology Associates of Central New York, East Syracuse; Chief of Oncology, Community General Hospital, Syracuse.   So a man whom other oncologists respect, and who knows what he is talking about when it comes to cancer and its treatment.

Writing about what he had learnt, and what he will be ‘adding in’ at his practice,  he explained that, as a result of attending the 2010 Annual Meeting of the American Society of Clinical Oncology (ASCO), he plans to make changes to his management of patients with cancer- and one of these is:

9. Offer yoga to cancer patients experiencing insomnia and fatigue.

As he says, “Hatha yoga has been demonstrated to decrease the incidence of these symptoms and to decrease the need for sleeping medications (Abstract 9013).14”.

So now you know – and for those of you who are yoga-fans, this proves what you have known all along – yoga is good for you!

www.asco.org

Cancer survivors need to be valued for what they can contribute

Learn and Share Event for Health Professionals

Macmillan are inviting people to a conference to talk about Survivorship.  The event seems designed for medics only, but surely, with the new thinking coming from the Dept. Health, if the event is talking about ‘survivorship’, shouldn’t survivors be asked too?

Many cancer patients are extremely articulate and knowledgeable, and have a lot to offer doctors when discussing our treatment. There are over 200 types of cancer, so no doctor can know everything there is to know about every cancer.  I am told there is a lack of cash to help improve their knowledge: hence

  • GPs receive 6 QOFs (quality outcomes framework points) per cancer patient
  • GPs receive approx 90 QOFs for dementia, diabetes and other conditions

QOFs form the basis for funding GPs – so it doesn’t take a mathetical genius to realise that many won’t have time or funds to find out more about cancer.  It is going to be up to patients to do research, and for doctors to listen to us.

So surely any event that talks about survivorship surely must involve everyone involved – patients, carers and the medical profession?

Macmillan admits that the cuts that will be happening in the NHS will mean that patients are going to have to be much more involved.  When Macmillan was founded by Douglas Macmillan he was a Carer – not, as one might imagine, a doctor – so let’s involve carers and patients more.

  • After all, many of us fund-raise.
  • We know what needs to be done.
  • We know what works for us
  • And we know what are drug side effects and long-term consequences

Let’s train doctors by sitting them next to a cancer patient at events such as ‘Learn and Share’, and letting patients talk and ask questions,  so exchange of ideas and information can really show doctors what needs to be done.

The Event :

Health Professionals interested in cancer survivorship issues are invited to attend the Wessex and South West Learn and Share event on Thursday 2 December 2010 in Winchester.

The aim of the day will be to share learnings from across the NCSI and collaborating organisations.

Sessions include ‘The patient and family experience

If you are interested in attending, and can get to Winchester, contact  survivorshipteam@macmillan.org.uk

Current thinking on Survivorship

There is a huge bank of cancer survivors who have given basic information to Cancer Voices, and it would seem the right time for Macmillan to think more creatively on how best to utilise their many skills. 

We frequently we receive alerts asking us to volunteer for various committees, etc., so surely it could be possible for  Macmillan to use this database to alert Cancer Voices to jobs and consultancies on Macmillan’s committees, instead of bringing in outside Consultants? 

These Consultants have turned up on committees where I have been asked to volunteer.  I found they lack suitable experience, but they do know how to write a CV to impress the NHS!

As a survivor, I was invited to a day-long event to discuss survivorship and Vocational Rehabilitation                                   ( consultant-speak for employment! )

Around the table were 19 people:

  • another cancer survivor (also a volunteer like me)
  • 17 employed people from hospitals (what have they got to say about OUR difficulties getting back to work?)
  • paid representatives of charities
  • the rest were working for Macmillan and NHS either full-time or as paid Consultants.

I was only person around table who had run a major company employing at times 500 people, and had worked on Government schemes to help people back to work – nationwide.  I also had cancer.  There must be many cancer survivors with HR experience, and if they had been invited to be on committee would have given valuable expertise.

Working on the committee was difficult:  someone would suggest something – which I knew to be against employment law.  I would wait for someone to point this out – but when no-one did, as a ‘new girl’ I had to speak up.

When it was obvious that there was no-one from Unions, other employers, ACAS, HR, etc. etc.  I resigned.  Was told that I was needed (got ten emails about this), so I said I would go to next day-long meeting if I were paid same as Consultants.  But was told this wasn’t possible.

Macmillan has been tasked by the NHS to set up the National Cancer Survivorship Initiative.  This funded by NHS, and surely  needs people who

  • have survived cancer
  • possess IT skills to develop www.ncsi.org.uk
  • or have worked for unions, in HR departments, as employers, as a Personnel Director, etc.

Many Cancer survivors are want to get back to work, but find it extremely difficult to get paid work because of needing treatment, getting tired, preferring to work from home, wanting part-time work, etc.   But working as a consultant survivors could easily fit this in, and contribute effectively to the National Cancer Survivorship Initiative.

So perhaps those with suitable experience could contact  Macmillan.  Using cancer survivors to fill vacancies would really be supporting us.

I am not talking about doing ‘goody goody’ work and employing us just because we have had cancer, but am sure amongst survivors there must be many with high quality relevant experience.

There are many fellow survivors who are very employable, but no-one thinks of employing them – I wonder why?!