We were right!
King’s Fund think tank says the coalition government’s changes wasted three years, failed patients, caused financial distress and left a strategic vacuum.
But Labour# efforts before last election hadn’t gained praise either.
King’s Fund think tank says the coalition government’s changes wasted three years, failed patients, caused financial distress and left a strategic vacuum.
But Labour# efforts before last election hadn’t gained praise either.
The revered Minister of State for Health, Andrew Lansley (this is him), seems a likely candidate for a bed in his ‘new’ reformed NHS, as he comes out with his pat phrases glossing over NHS shortcomings.
To prevent you going bonkers too when trying to understand what medics are spouting, here is my handy guide to what I think he actually means when he comes out with gobbledegook.
The British Medical Association and the Plain English Campaign have criticised the NHS’s use of words such as ‘service users’ and ‘clients’ to describe patients. They said gobbledygook phrases were causing confusion for staff and patients alike.
I agree. Nothing enraged me more whilst being treated for cancer than each time I was called a ‘customer’. A customer is someone who goes into a shop and decides to buy something – not a patient who has woken up one day and found they have cancer. But officials can’t understand that, unlike shops’ customers, I did not choose to pick cancer off the shelf.
Do you need an Interpreter?
No, I have finally realised they aren’t mistaking me for an immigrant. They are being polite as they realise it is sometimes difficult to understand what medics say.
You have to understand he is following the phrases his computer is programmed supply phrases when writing his speeches.
One of his favourites is 5000 fewer managers, 4000 more doctors: (and similar misleading phrases). By the time you manage to Google this to try and confirm where he gets his figures from, ask a Dept. Health Press Officer (where do they pick them from?) or contact your MP, the translation will be lost in mists of time (with any luck for LaLa).
But despair not – this and similar phrases are just plucked out of thin air to sound good in TV sound bites.
Baffled by opposition (stock reply when your MP manages to ask a sensible question…) translation:
I have not been listening to any other views but mine for the last 18 months
Care provided by the NHS will remain free at the point of use:
That’s provided you can work your way through the minefield and actually find someone to deliver this before you are carted off to the old people’s home and won’t need it any more.
Alternatively, for those of you whose nerve has crumbled and you bought health insurance, of course your care is free (to the NHS) because the insurance company will pay
Cutting management costs:
When you phone your hospital for an appointment, most will offer an option to ‘press button No. X for private appointments’. With any luck you will get so fed up with waiting for the call centre to answer that you will press this option – thereby cutting NHS costs
Doctors tell me they want these reforms: Translation: I once met a doctor who told me he supported part of my Bill
Evidence shows: translation: Er – I’m making this up. Please don’t ask where I got my evidence because you will be fobbed off by different departments until you give up.
Hand more control to patients:
Well, we can’t manage this so with any luck we are hoping you will all go privately and sort out your own care.
Health and social care integration:
(misleading phrase) cutting budgets for both health and social care
No decision about me without me:
this misleading phrase was set to be Lansley’s signature cry – but rebounded. Means you do have a choice : either stay in system and wait – or go privately
No top-down re-organisation:
We can’t ask senior management because they have all taken redundancy and negotiated higher pay packets working for the new quangos we are setting up.
Biggest re-organisation since 1948 With any luck no-one is around from that time, so doesn’t remember the days when Matron managed the hospitals more efficiently
Ploughed back into patient care:
In the Dept. Health we are becoming experts at robbing Peter to pay Paul.. We can constantly play the game of announcing ‘new funding…..’ and with any luck we won’t be around once they have worked out what we are cutting to pay for this.
Liberate NHS from bureaucracy:
get rid of layers of Administration such as PCTs, and replace with two layers for every one we close down
Let’s take the politics out of this
The opposition are getting too near the nitty-gritty
The bill enjoys the support of all the clinical professions: there are fairies living in the Dept. Health’s massively expensive collection of plants in their indoor garden
Those who are against the bill just don’t understand it:
1) everyone is out of step but Lansley
2) almost nobody understands the Bill, especially MPs, but luckily the Coalition has more MPs than the opposition, and the Whips make sure they vote the way Lansley wants them to vote. Who mentioned Democracy?
doctors/clinicians are already (…):
We have bribed some medics near retirement with lovely Quango posts to get them to carry this out
Patients will be involved We 1) We just make sure we don’t ask any of them in the first place; then by the time they find out we have closed the Enquiry down and no-one is around to answer questions. 2) Copy the Future Fandango (Forum) format. Announce patients are going to be involved, then make sure there is no contact address so we don’t have to answer questions asking who are patient reps.
If all else fails, LaLa can copy his revered Boss and only invite those backing him to tea at Downing Street – or Richmond Towers.
Americans may pay more for cancer treatment, but they also live longer after diagnosis — getting a benefit that offsets their higher health expenses.
Policy Research at the University of Chicago suggests the answer may be yes, at least when it comes to cancer care.
“We found that the value of the survival gains greatly outweighed the costs, which suggests that the costs of cancer care were indeed “worth it,” wrote University of Chicago public policy researcher Tomas Philipson and colleagues, in a paper published by the journal Health Affairs.
So is it worth it in Britain?
With all the talk in the media about costs of cancer care, isn’t it about time we turned this around, and worked out what benefits are gained by helping people live longer?
Cancer patients are constantly being told that a drug is too expensive to be given to everyone who needs it – but shouldn’t we turn the tables and work out the benefits to family and work in the equation? That person who has the very expensive drug that prolongs their life – might they not still be raising children and contributing to the profitability of the company they work for?
What happened in the States
To examine whether the higher costs were “worth it,” Philipson and his team mined extensive databases to compare cancer treatment costs and cancer survival data in the U.S. with those in 10 countries that represend 36% of the population of the European Union: Finland, France, Germany, Iceland, Norway, Slovakia, Slovenia and Sweden, as well as Scotland and Wales.
First, the team examined the costs — and found that Americans spend much more on cancer care than Europeans, with U.S. spending increasing 49%, from $47,000 per case to $70,000 per case (in 2010 dollars,) between 1983 and 1999. In the European countries, spending grew 16% over the same period, from $38,000 to $44,000.
Then they looked at survival data for patients with types of cancer, including breast, prostate, colorectal and blood cancers, among others. Comparing length of time from diagnosis to death, as well as differences in survival gains over time, they discovered that among patients diagnosed from 1995 to 1999, average survival in the U.S was 11.1 years and in the European countries studied was 9.3 years. These statistics might seem old, but when carrying out research to get a broad picture often older statistics have to be used.
Finally, the team used a standard method to put a “conservative” monetary value on the extra longevity of $150,000 per year. Crunching all the numbers, they found that the extra years Americans enjoyed amounted to $598 billion worth of benefit over the period studied — about $61,000, on average, per patient.
“A key question for policy makers is whether the U.S. survival gains are actually produced by higher U.S. spending on cancer care or by some other factor unrelated to the healthcare delivery system,” the team wrote, cautioning that the analysis does not prove that all treatments are cost-effective.
However, as David Cameron and Andrew Lansley are always reminding us, UK cancer survival rates lag behind those in France – so would seem they agree with Philipson.
One influencing factor might be the faster adoption of new technologies in the U.S., the authors wrote. Their paper was accompanied by several more articles exploring the costs and benefits of U.S. cancer care. This would find favour with medical guru Lord Darzi, who has been heard to ask “what good is NICE?”
So next time some politician or NHS administrator tries to refuse use of a drug – get them to work out the long-term benefits; these might add weight to what can be an emotive subject.
Breast Cancer Care (BCC) is one of the charities whom I support as much as I can. But sadly, not many people know of its existence.
This could be about to change, thanks to a ‘new’ style of advert thought up between advertising agency M&C Saatchi and The Mill, to launch an innovative advertising campaign to ‘support the woman behind the breast cancer’.
As a survivor, I am grateful to Estée Lauder and her company’s ground-breaking support for us with their pink ribbons; but recently these ribbons were pinned on to a great many campaigns that just seemed to be riding on the emotive appeal.
Now, using a very beautiful woman who has obviously had breast cancer, and adding the thousands of pills we have to take – which have given so many of us unthought of problems, whilst helping keep us alive – this video uses them all very effectively, to get across that we cancer patients are also human beings.
Breast Cancer Care knows we need better care
Research by BCC confirms the wide-ranging, long-lasting effects of breast cancer on women’s physical and emotional wellbeing. This past couple of years David Cameron and Andrew Lansley have totally lost any support I gave to the Conservative Party in the past; each time they gave a speech, both of them trotted out the cliché that Britain’s cancer care was way behind that offered to Europeans (cue for sob story) but NEITHER uttered one sentence showing the many ways we could copy this treatment at little or no cost. They were climbing on the bandwagon that says “cancer is vote catching’, without offering one practical solution.
But BCC carred out a survey, and found that after treatment:
The new advert raises awareness that when breast cancer overshadows everything, Breast Cancer Care is dedicated to providing round-the-clock emotional and practical support to the person behind the disease – from diagnosis, through treatment and beyond.
More than 48,000 people are newly diagnosed with breast cancer every year in the UK, and as incidence increases and statutory provision becomes more pressured, the services Breast Cancer Care offers are more urgently needed than ever.
M&C Saatchi has worked with Breast Cancer Care on a pro-bono basis to develop this impactful creative, and this photo shows a still from the campaign.
Where can you see this?
The advert will feature throughout the UK on Clear Channel billboards and outdoor advertising poster sites. Look out for them a bus stops, where Clear Channel provide a lot of the advertising panels that feature on these.
Together with M&C Saatchi, The Mill, creators of award-winning video projects, have produced a video featuring a woman emerging from a veil of medication, bringing to life the concept. A pro-bono Facebook advertising campaign with Sponsored Stories is being coordinated by BLiNQ Media to reach thousands of users at www.facebook.com/breastcancercare.
What it’s like
To bring to life the issues faced by those with a breast cancer diagnosis, Breast Cancer Care has recruited guest bloggers to talk about their own experiences on the campaign area of the charity’s website: www.breastcancercare.org.uk/thewoman.
Erin, 32, from Milton Keynes, speaks for many of us when she says: “Of course it’s important to have medical treatment for breast cancer and I expected side effects, but I definitely underestimated the impact having breast cancer would have on all aspects of my life. I had children to look after; I lost my confidence and my hair and wasn’t able to work any more.
“My medical team were great but they were busy and I didn’t want to bother them with my questions. When I heard about Breast Cancer Care it was comforting knowing there was help available …… I rang the helpline with my questions and they patiently answered them. I think every woman should know that Breast Cancer Care is there to support them every step of the way.”
I totally agree with Erin; at hospital the over-worked staff constantly said ‘phone a helpline’. But having worked on many fund-raising events for the charities that offer these services, my feeling was, “I raised money to help others, not myself”. But eventually I did phone – and what an incredible amount of helpful information is provided by the helpline nurses!
Samia al Qadhi Chief Executive at Breast Cancer Care said: “We are delighted to have the support of M&C Saatchi, and all our partners, in creating an innovative advertising campaign that reaches out to the woman behind every breast cancer diagnosis. We know from supporting thousands of women that it can be all too easy to forget that the treatment of breast cancer isn’t just about a woman’s physical health”.
“ in 2010 alone we had 3 million requests for support. And we know how to support the women behind the breast cancer because they’re involved in everything we do: contributing to our publications, participating in our campaigns and helping to raise money for our work. Two-thirds (66%) of women who have received a breast cancer diagnosis feel that their friends and family have moved on after a year and they need our support. Breast Cancer Care’s website, online forums, Helpline, publications and information sessions are all there to help them.”
So this campaign is a very thoughtful way of emphasing our pill-laden life, and how we have to depend on so much that is pumped into our bodies, which are poisons to a greater or lesser degree. I keep on replaying the video – and hope you like it as much as I do.
www.breastcancercare.org.uk 0808 800 6000.
My local hospital is so fed up with complaints over food, it has raised a massive stories-high banner in its Atrium, which proudly says its food received an EXCELLENT in the PEAT Awards. All costing £600.
Doesn’t mention that PEAT awards are researched by hospital staff – who sometimes forget to take negative comments into account.
What Hospitals should be doing is making sure stuff it feeds us is fit for purpose.
Good things are happening
University Hospital of Wales, in Cardiff, is about to surprise us.
NHS patients in Wales will receive meals based on mandatory nutritional standards, with limits on the amount of saturated fat and salt but plenty of protein, fruit and vegetables.
The guidelines say patients must also receive seven to eight drinks per day; water jugs must be changed three times a day and snacks must be available 24 hours a day.
All hospitals in Wales must have fully implemented the standards by April 2013. (Why not now?)
Campaigners are calling on the UK Government to follow Wales’ lead and introduce nutrition standards for all hospital meals.
If you visit hospital frequently, and can’t stand the food, what have you done about this?
The Good Food for Our Money campaign is now calling on Health Secretary Andrew Lansley to follow Wales’ lead and implement a system in England. The campaign is a coalition of groups including the National Heart Forum, Patient Concern and the Royal College of Paediatrics and Child Health.
Alex Jackson, co-ordinator of the Good Food for Our Money campaign, said: “Introducing legally binding standards for hospital food in England is the simplest and most effective way to improve patients’ meals.
So what can you do?
What you can do is
“It’s unacceptable that hospital patients in Wales will be guaranteed healthy meals but patients in England will not.
Or you could phone the Patients’ Association and ask them what can you do? Katherine Murphy, chief executive of the Patients Association, said: “Patients in hospital need every support to get better and back to their families as soon as possible. A healthy and nutritional meal is one of the key steps on the road to recovery. Patients must be given nutritionally balanced and healthy meals as standard when in hospital.
“Wales is leading the way when it comes to free prescription charges and it is excellent they are guaranteeing healthy meals in their hospitals.
“Andrew Lansley needs to sit up and take notice and make these initiatives apply in England.”
What Wales is doing
The all-Wales catering and nutrition standards for hospitals outline exactly what patients should be offered daily, including the calorie content of each main meal and snack.
They require that patients are given a choice from a “varied menu”, a missed meal services is available and that main meals should be available every four to six hours throughout the day.
And the standards include the minimum provisions – such as tea, coffee, biscuits, jam and milk – that should be available on every ward.
In their introduction to the guidelines, chief medical officer for Wales Dr Tony Jewell and Professor Jean White, chief nursing officer, said: “Hospital food is an essential part of inpatient care. Good food can encourage patients to eat well, giving them the nutrients they need to recover from surgery or illness.
“The aim is to elevate the provision of food to the same importance as medication; raise awareness of nutrition in relation to patient safety; and to enable catering to be recognised as a clinical support service.”
A Welsh Government spokesman said: “Significant work has been done in Wales to improve hospital food and support for patients to eat their food.
“On admission to hospital, the nutritional needs of all patients are assessed and standards are in place to ensure that they receive high quality food consistently in hospitals across Wales.
“This is backed by a nutrition awareness campaign for staff aimed at raising the importance of food and hydration to the same level as that given to medication.
“These are simple things that make a big difference to patients and we hope others will follow the example of the NHS in Wales on this work.”
Good luck – and Bon Appetit!
Cameron has been stuttering away trying to make up a sound bite for the cameras (he should realise that after past master Tony Blair, no-one else comes near), and all he could come up with was ‘The Four Fs’.
Whitehall Wags’ emails were red hot with suggestions as to what the ‘Fs’ stood for (most printable was ‘feeble’).
But all he did was to remind me of an old Army saying; when anything goes wrong it is described as a ‘Grand Military F-Up’.
Apart from laughing at the ditches he and LaLa are digging, what about US? To use another military phrase, who cares about the PBI (poor bxxxxy infantry) i.e. Patients?
Around the Country patients are gleefully or morosely sending in the latest from the health front line. Some of the ways of getting NHS treatment are inventive and deserve a wider audience – so I am going to put up the best ideas on this page. Watch this space!
Cancer patient was taken ill in middle of Chelsea (as one is). Kindly shopkeepers called an Ambulance, which parked up in quiet street whilst two very competent Ambulance Crew got on with doing their jobs -superbly as usual. They installed patient in a comfortable position, and got on with ECGs, evaluations, monitoring, BP, etc. etc.
As things went on, her Blood pressure dropped, she began to feel more alive, and found herself the centre of a very caring team effort. After about an hour or so, one of the Ambulance crew said they were going to take her to A & E.
This was not such welcome news. She had been there before; it isn’t exactly known for TLC, and she had glanced at the Junior Doctors TV programme filmed there, which had filled her with dread. Pleading with the Ambulance crew, she asked to be taken home. They asked her searching questions about her home circumstances – then decided that provided she would accept a visit from her local GP, they would take her there.
They accompanied her into her flat; made sure she was warm and had everything to hand, then departed.
Shortly after they phoned to say they had contacted her GP, and the GP would be coming round to see her.
Only thing wrong with this scenario – the GP is already well entrenched in the new Health Reforms, so phoned to say she was too busy to come.
Latest figures from around the world show cancer mortality rates declining
Britain’s Cancer Research UK (CRUK) is amongst top cancer research establishments working around the world to help prevent and treat cancer, and has done much to help improve cancer outcomes.
CRUK is admired by top hospitals and oncologists around the world for the excellence of their research. Once, Britain’s hospitals were at the forefront of cancer treatment. Today, David Cameron and Andrew Lansley are fond of saying we lag behind the world in cancer treatment – and they don’t seen inclined to do anything about this.
But thanks to CRUK’s, Britain still leads in the world of cancer research.
CRUK is entirely funded by donations from the general public and major corporate fund-raising i.e. YOU. In 2010/11 £332 million was raised, proving that when politicians leave British world-class establishments alone – they remain world class.
Achievements in 2011
Without political interference, CRUK can co-operate with research going on in other countries; co-operating where one research centre can best learn from another. Scientists often work closely with colleagues in other labs – often in other countries – sharing resources, passing on expertise, and looking at the problem through multiple lenses.
Medscape website cited ”2011 – top game changers in oncology”, and listed what, in the opinion of a number of leading cancer researchers, were the year’s top ten developments in international cancer research.
So what does your fundraising pay for?
Just as researchers’ progress is interwoven with the efforts of others, so many of recent worldwide discoveries are built on previous hard work by scientists whom, thanks to your support, CRUK has funded.
Here’s a list of Medscape’s top ten ‘game changers’, and – where relevant – CRUK’s role to help bring them about.
Swedish trial shows new ‘Herceptin-like’ drug improves survival in Her2 breast cancer that’s spread
A new modified version of trastuzumab (Herceptin), called trastuzumab emtansine (or T-DM1), gave improved results when compared against the standard treatment (trastuzumab given with separate chemotherapy) for women with advanced breast cancer, according to a Swedish trial presented at a leading European cancer conference.
The new drug works in a similar way to a lymphoma drug – it uses trastuzumab to ‘lock on’ to breast cancers that contain the Her2 protein, but also has a toxic ‘warhead’ – emtansine – to improve its ability to kill cells. The advantage this drug has over using trastuzumab with a separate chemo drug is that it’s much less toxic, so can be given for longer.
CRUK researchers were heavily involved in the basic biological studies that ultimately led to trastuzumab, which targets a protein called Her2. Iin the 1980s a team of CRUK researchers in London discovered that a protein called EGFR is involved in cancer, and suggested that targeting it might be a good way to treat cancer. Other researchers subsequently discovered EGFR’s ‘sister’ protein, Her2 (EGFR is also known as Her1).
European trial improves neuroblastoma outcomes
At June’s American Society of Clinical Oncologists (ASCO) conference in the US, researchers from Austria showed that a treatment strategy involving two drugs – melphalan and busulphan – in place of current standard chemotherapy, could dramatically improve survival rates for children with neuroblastoma.
Both of these drugs were developed by CRUK’s scientists back in the 1950s. One of the questions CRUK get asked most on their Facebook page is about progress in childhood brain cancers – this research shows how beating this form of the disease has been a burning issue for researchers past and present.
New horizons in lung cancer
Also at ASCO, the team behind a large US study of lung cancer genetics showed how a slew of previously-known mutations is involved in ‘driving’ the disease. Since drugs that target many of these are already being developed, this raises the prospect of a transformation in lung cancer treatment in the near future.
CRUK has been heavily involved in the hunt for cancer-causing gene mutations over the years, and several of the genes spotted in this study were originally linked to cancer by Cruk funded researchers – notably BRAF, EGFR and NRAS.
Big strides in ‘ER-positive’ breast cancer
A large US trial showed that a combination of a targeted treatment called everolimus and a second drug called exemestane was so effective in treating oestrogen-sensitive breast cancer that the trial had to be stopped early to allow all participants to receive the treatment.
The lead investigator said the results were the “strongest data ever”, while another commented that it was “the most important advance” since trastuzumab (Herceptin) for women with this subtype of breast cancer.
Exemestane is a drug that’s been around for a while, and works by blocking the action of aromatase – part of the machinery the body uses to make oestrogen. CRUK’s researchers led the first clinical trial of an aromatase blocker, and this was proof-of-concept that aromatase was an effective target for treatment. They have also been heavily involved in trials to demonstrate how best to use these drugs.
Longer treatment of GIST with imatinib improves survival
A Finnish trial showed that patients with gastrointestinal stromal tumours (GIST) – a form of stomach cancer – survived even longer if they were treated with imatinib (Glivec) for three years rather than just one, settling a long-running debate in the medical community.
CRUK’s involvement here is substantial: in the early 2000s, researchers at The Institute of Cancer Research, funded by CRUK, worked in collaboration with others on the continent to run phase I, II and III clinical trials which resulted in approval of imatinib for use in advanced GIST. These results were used to convince NICE to recommend the drug on the NHS.
New drug for lymphoma gets US approval
“Probably the hottest new drug out there” was how one clinician described a new treatment, known as brentuximab vedotin (Adcentris), for patients with either advanced treatment-resistant Hodgkin’s lymphoma or treatment-resistant anaplastic large-cell lymphoma.
The drug is made of two parts – a ‘cancer-seeking’ antibody which targets a protein found on these lymphomas called CD30, and a toxic ‘warhead’ called MMAE, which poisons the cancer cells’ interior. The results are an exciting proof-of-concept, as a US researcher told Medscape: “We now have demonstrated that you can take an antibody and link it strongly to a poison. It will get in the cells and kill them, without doing much damage to the rest of the body.”
The drug is not yet licensed in the UK, but its manufacturers have applied for a European license.
Drug combo extends survival in pancreatic cancer, but with increased side effects
Research published in the New England Journal of Medicine showed that a combination of four different chemo drugs, known as FOLFIRINOX, gave ‘best ever’ survival rates in patients with advanced pancreatic cancer.
But the combination wasn’t without its downsides – the treatment is much more aggressive than the standard treatment of gemcitabine (either alone or in combination with other drugs), so the authors only recommend treatment for younger patients (<76 years) (Bless’em – they obviously don’t believe the over-60s are past it!)
High-dose methotrexate for acute lympoblastic leukaemia (ALL)
A large phase III trial in the US, reported at the ASCO conference, showed that treating children with a high-dose of a drug called methotrexate, rather than starting at lower doses and increasing them, led to better survival rates among those at high risk of recurrence.
Lung screening edges closer
CRUK has a warning: Medscape’s number two development is, to us, a little controversial. As we reported on our news feed in August, a large US trial showed that screening heavy smokers with a technique called ‘spiral’ CT scanning, cut subsequent deaths from lung cancer by 20 per cent. This is a great result, but needs to be treated with caution – investigative surgery after having a positive result can be risky and invasive, so how exactly to use this technique to minimise these harms.
It’s worth pointing out that the link between smoking and cancer was identified in the 1950s here in the UK by Professors Richard Doll and Austin Bradford Hill. Professor Doll, together with Professor Richard Peto, went on to find out more about this link, and much of this work was supported by CRUK. Consequently, we now know that smoking causes one in four cancer deaths, and is the leading avoidable cause of cancer.
Finally – progress in melanoma treatment
It’s no surprise that the top spot for ‘game-changing’ research went to research on melanoma. Several decades had past with little new to offer patients with the disease, but the Medscape authors describe the development of two new melanoma drugs – vemurafenib and ipilimumab – as “unprecedented”.
The first of these – vemurafenib – is one of a group of drugs called BRAF inhibitors, which target a molecule called BRAF. These drugs wouldn’t have been possible without the pioneering work of CRUK scientists, who in 2002 discovered that over half of melanomas (and a significant proportion of other cancers) are caused by faults in the BRAF gene.
As well as being potentially a big step forward, vemurafenib exemplifies many elements of the new direction of cancer treatment, built on molecular knowledge of cancer’s inner workings (something we devote about 40 per cent of our funding towards)
Ipilimumab is a bit different. It’s an antibody, which – in some people – causes their immune system to seek out and destroy melanoma cells in their body. Whilst we were disappointed to see that the high cost of ipilimumab, and the fact that doctors can’t predict who will respond and who won’t – means that NICE don’t think they’ll be able to recommend it for routine use in the NHS, it’s among several other immunotherapy drugs that have shown promise in clinical trials.
It seems that after many years in the shadows, immunotherapy is finally entering the limelight.
In summary, CRUK says this isn’t a definitive list – other significant hurdles were cleared this year too. But reading through the Medscape report, we were struck by several things:
It was also heartening to see how the international research community is pulling in the same direction, and humbling to see how the research CRUK fund with out donations fits into this bigger picture. So the £332 million that CRUK spent of our money last year, seems to be well spent.
There comes a time in all our lives when we are spitting about lack of help and/or information we can find from health professionals.
In Britain, everyone from drug companies to nurses abdicates responsibility and says, “ask your GP”. So when your GP has just told you, “you know more about cancer than I do”, one of these websites might be able to deflect anger – and even give you helpful information.
So before you send an email in UPPER CASE, click on one or two of the addresses below:
A BETTER NHS Written by an NHS doctor, this has been set up to inform twitterers and others about the real scandal going on with the NHS, which is its conversion into a pre-1948 (start of the NHS) market economy as a result of steady lobbying from UK and US private health insurers. www.abetternhs.wordpress.com
DANA-FARBER My favcurite American Cancer Hospital has launched Insight, a blog providing expert commentary on the latest news in cancer research and care, and insight on issues relevant to cancer patients and their families. Dana-Farber is the first New England hospital to publish a blog that focuses exclusively on cancer-related topics, and will cover the latest scientific advances and treatment options, practical tips for patients and families coping with cancer, and patient stories. It will also feature on-the-scene commentary from some of the nation’s largest medical conferences. www.dana-farber.org then key Insight into search window.
GERMAN website: for German readers – www.medien-doktor.de
GOOGLE SCHOLAR A good source of medical information when you need details of clinical trials, and other stuff to shove under doctor’s noses when they turn them up because you aren’t medically qualified. www.scholar.google.com
ROY LILLEY, well-known as a blogger extraordinaire, edits www.nhsmanagers.net . His comments are always to the point (although Cameron and Lansley must wince when they get a digest), and I often laugh out loud when I read this.
MAMMOGRAMS There is a huge debate going on in medical circles about to screen – or not to screen. i am NOT medically qualified, but if you want to find out about information not to screen, Mitzi Blennerhassett has a very informative blog about screening mammography at www.evenstarsexplode.wordpress.com
MEDICAL LESSONS is a serious blog, really aimed at doctors, but worth reading because if you happen to have what it’s blogging about, you learn an awful lot! http://www.medicallessons.net/
JUDITH POTTS Judith was an actress, had breast cancer, and now produces a lively blog for the Telegraph http://blogs.telegraph.co.uk/news/judithpotts/100140789/nhs-improvement-helping-change-cancer-care-in-britain/
PUBMED This site comprises more than 21 million citations for biomedical literature from MEDLINE, life science journals, and online books. Citations may include links to full-text content from PubMed Central and publisher web sites. Doctors use this, so they can’t turn up their noses if you cite PubMed as your source. And, what doctors in UK don’t tell you, it is an American site, set up and run under US Government. So info is really up-to-date. http://www.ncbi.nlm.nih.gov/pubmed/
THE CANCER MADE ME DO IT It’s Carol’s blog, and she has no hesitation in taking on High School kids who laugh at her strange headgear, or so-called friends who discuss her medical condition and think she can’t hear – right in front of them. We can all remember ‘friends’ who utter crass statements; when this happens, just log on to this website and have a wry laugh. www.thecancermademedoit.com
And if you know a good blog – add it to the Comments box please.
attributed to Confucious
Confucious, the Chinese philosopher, may have lived hundreds of years ago, but he had appropriate words for today’s troubles, including the quote about.
La La Lansley should take note, and leave the NHS alone to heal itself.
It’s time he stopped producing sound-bites for the media, and got down to solid WORK. He should LISTEN to doctors, nurses, and above all patients. They will tell him where the NHS is going wrong – and how it can heal itself. He says he is keen to listen. It’s what we pay him for, and time he justified his large Ministerial salary (and all the perks).
For those who have recently had difficulties accessing NHS care, you are not alone. In fact, those who work for the service have just as many problems when they need medical care, as we patients do. No matter if you know the inside of the NHS – you can still have problems, as Monica’s story shows.
Below is an un-edited letter from Monica, an NHS employee. It appeared first on NHSmanagers.net. Editor Roy Lilley has given me permission to copy this, as he and I think it needs to get to a wider audience:
It truly sucks and is getting worse – I just wanted to share my own experience as a senior interim healthcare manager who has worked in the health service nearly all her working life, and unfortunately had to become a heavy user of the NHS this year when diagnosed with kidney cancer.
Diagnosed renal cancer in May 2011- advised could wait for surgery until after daughter’s August wedding as this type of cancer never spreads
May: Received letter from PCT – advising had abnormal cervical smear and to book appointment – trouble is had not had abnormal cervical smear – or any smear – rang and advised that this would be sorted out – my records muddled up with someone else’s.
Received an appointment for a CT scan that was for someone else.
Admitted over the August bank holiday for surgery. Ward staffed entirely by agency who did not turn me when could not move post op for 36 hours – result = chest infection.
Advised by agency staff to use morphine pump every 5 mins. Stopped by consultant when BP dropped in its boots and was given wrong advice. Kept curtains closed from 9.30am through to past lunchtime 2pm – did not help with washing – refused male help on grounds of dignity. Nursing care in a top Foundation Hospital over bank holiday period appalling – did not make formal complaint but complained to charge nurse when usual staff returned on the Tuesday after bank holiday. Nursing care much improved with permanent staff.
Complained of arm pain to surgeon post op which had had since March – go see your GP was told – had to ask for chest X-ray to check for secondaries. No bone scan performed on grounds not required.
September – received reminder letter about abnormal cervical smear – made formal complaint with end result – records not altered from May and I have a duplicate NHS number! Some poor soul had to wait about 6 months for her abnormal smear result.
Oct 2nd Returned to work 5 weeks post op – suffering neck- arm pain and increased stiffness. GP advised tendonitis – physio required. First appointment 11.11.2011 so in order to continue working had to have 5 sessions private physiotherapy. Physio advised needed neurosurgical opinion/injection into spine and MRI. GP cannot refer for MRI so suggested I pay for private which I did. Showed nerve root compression at 2 levels and spinal canal stenosis. GP referred triage 22nd November back pain clinic who triaged through directly to neurosurgery.
21st November – Could not continue to work owing to increasing pain in arm and shoulder. GP advised go and buy paracetamol for pain relief as cheaper.
Commenced private osteopathy to help with neck stiffness/pain and arm/shoulder pain. Neck pain eased a little but arm pain made worse.
30th November – GP had referred to general surgeon at Princess Royal re lump in neck – advised 4-6 wait for ultrasound scan and could not touch until neck disc problems sorted out.
3rd December – in severe pain – private physio referred to private neurosurgeon who advised shoulder probs worse than the neck – wrote to GP with plan 4th december (do they read any letters?). Prescribed better pain relief and advised need orthopod opinion and bloods. Suggested positioning during surgery may have contributed to neck and shoulder problems (all neck discs shifted to the right)
19th December – as pain so severe, and totally ground down by pain and the GP system – made appt went to see private orthopod
21st December- saw private orthopod – very helpful wrote to GP telling them off – I am on sickness benefit and cannot afford private care. Advised need 2 week pathway for potential secondary and frozen shoulder. Require urgent distension arthrogram for pain relief (performed on 22nd December). (injection of steroids and local anaesthetic)
29/12 – Still no appointment from King’s neurosurgeons and advised in phone call not on system. Rang neurosurgery to phone message – owing to office move not available till 7th January!
Also, don’t take no for an answer and do not always believe what the docs tell you – they are often wrong and just want to get you out of the office.
The private care I received was excellent and countered diagnoses of NHS care. What makes it worse is that I am against private healthcare but have been forced to use it.
Cost of private healthcare (which I borrowed) = Physio £245. MRI: £325.00. Osteopathy: £205.00. Private neurosurg opinion: £250.00, Private orthopaedic opinion = £200. Distension arthrogram £1,000.
Total of £2,225.00
Who do you suggest I send the bill to?
PS – using voice recognition to write this e-mail and you can use this e-mail in whatever way you deem fit.
Postop nurse rang to say path resuts = benign tumour – I did not believe it but my family did – countered next day by surgeon who rang to say malignant rare tumour. Family put through the mill. Obtained apology at post op consultation and included apology in clinic letter.
Now you see why I say:
Get what we’ve got working like a clock –
then, take the time to fix what’s not.
Monica’s email is horrendous but in no way untypical of the letters I get every day. For the last editorial this year it is right a manager and patient has the last word…..
If you have any comments you can contact Roy at firstname.lastname@example.org
Or leave a comment below and I will pass it on to Roy and Monica.