Monthly Archives: December 2011

Cancer patients should be careful on the golf course

Watch this video and beware!

Jack Nicklaus

Jack Nicklaus Flickr

 

Author of several books, including “Laugh ’til it Heals“, Christine K. Clifford doesn’t believe in showing a gloomy face.

As far as she is concerned, laughing at cancer is the way to go – and her ‘take’ on situations that face us is often hilarious.

During cancer treatment she had the opportunity of watching several of her golfing heroes play, including Jack Nicklaus, with embarrassing consequences.. .

 

The video below explains what happened, and why we should be careful if we end up on a windy golf course – particularly one where the eyes of the golfing world are focussed:

 

La La Lansley finally comes up with sensible idea

James and his snowman (from the 1982 film) mee...

La La in disguise? Wikipedia

Dept of Health

agrees £20 million funding

 

Over the Christmas period, the august Dept. of Health got into the spirit of the season.

And the Department came up with funding to provide Snow wardens, winter workers and community angels to help with shopping and heating homes and provide assistance across the country during the cold weather.

£20 millions was promised to 163 Councils in Government funding. This will enable them to run innovative schemes to help vulnerable people keep warm and safe, and prevent people needing to go to hospital during the winter months.

Schemes include:

Wakefield’s Snowbell Responders will offer free emergency heating, home insulation, visits by a handyperson, benefit checks and home fire safety checks. This scheme, which has received £90,900 from the Department of Health, will help almost a thousand households in Wakefield.

Community Angels in Cumbria will encourage people to look in on their neighbours. Homeless people will be helped into housing and urgent heating and insulation help will be provided for vulnerable people. Cumbria’s bid totals £377,500.

Blackburn’s £114,500 bid will recruit Winter Buddies to help vulnerable people access support services. And emergency packs containing a fleece, hot water bottle, thermal socks, hot drinks, soups and low energy halogen heaters will be distributed.

Lambeth has been given £131,000 for a Winter Workers team to carry out welfare visits, do shopping, walk pets and collect prescriptions. Three hundred Snow Wardens will provide cold weather assistance if it snows. And a handyperson service will help promote energy efficiency, install draft proofing and provide practical aids such as thermometers and body warmers.

In Christmas mood, Lansley said, “Severe winter weather is a real threat to vulnerable people. People are more likely to suffer heart attacks and strokes, respiratory illnesses can get worse, and there is the risk of falls on slippery ground.

“Every vulnerable person needs help in winter, whether it’s help with shopping, heating the home or making hot meals. We asked councils to come up with innovative ideas to look after their communities and have made £20 million available to fund their plans. I welcome how local authorities, together with charity partners like Age UK and the Community Foundation Network are putting support networks in place. This funding will equip those services to respond to needs and emergencies.

“From mending boilers in Blackburn to walking labradors in Lambeth, this money will make a huge difference to tens of thousands of people this winter.” Age UK is building on this with its own Spread the Warmth winter campaign which aims to help 360,000 older people keep warm and well in the winter months.”

Mind you, as with all Government schemes, it’s not as kindly as it sounds.  It is estimated that over £850 million is spent by the NHS each year as a result of the impact of cold housing on people’s health.

More information:

The Warm Homes Healthy People http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_130564

Or contact your Council, or local Age UK branch.

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Benefits – Government climbs down a step

Money woes hit cancer patients


but bullies made to climb down

 

If having chemotherapy wasn’t bad enough, under new Government regulations patients faced losing a large part of their entitlement to benefit if they weren’t able to work.

Now, after a barrage of criticism from Age Concern, Macmillan and many, many others, the government has rewritten plans to change benefits for cancer patients.

Getting real, it has said “it was clear some patients were unfairly missing out on support.

So having spent millions on changing the rules (without listening to those who understand these things), La La’s bully boys have had to climb down – a bit.

Employment and Support Allowance (ESA)

The dispute centres on the Employment and Support Allowance (ESA) system, which divides claimants into two categories.

Previously, only those receiving non-oral chemotherapy were eligible for unconditional assistance, but now a wider range of drug and radiation treatment will be included.

But Macmillan said some patients could still be made to undergo medical assessments before receiving benefits.

These assessments can be undertaken by civil servants with no medical training, and as polio patients have found, no understanding of medical problems of those faced with diseases.  e.g. some polio patients are able to shuffle a few steps – then that’s it.  Assessors were saying “let’s see you walk”, then after three or four steps, ticked the box that said they were able to walk – and didn’t wait to see if patient was even able to return to where they started.

The government was hoping to introduce the amended plans from April, but having failed to secure Macmillan’s support, was launching a consultation to obtain a wider range of views.  One questions why La La didn’t consult with charities before starting this?  Why waste yet more money on expensive ‘consultations’?

Those deemed to have limited capacity for work are placed in the Support Group and are not required to undertake any work-related activity.

Those who are deemed able to perform “work-related activities” which might help them eventually return to work face means-testing after 12 months.

‘Debilitating’

Under the government’s original proposals, only those patients whose chemotherapy drugs were injected into a vein, the abdomen or the spinal canal would automatically be placed in the Support Group.  This took no account of radiotherapy or hormone therapy treatment, which can be equally devastating.

 

[We] remain of the view that automatic entitlement is vitally important for cancer patients receiving treatment”

Macmillan Cancer

Those receiving chemotherapy drugs orally – perhaps taking tablets at home rather than visiting a hospital – or receiving radiation only would go into the work-related activity category.

The consultation document states: “This was based on a view that invasive chemotherapy is more debilitating in most circumstances than oral chemotherapy. However, this view is no longer supported by the evidence.”

It goes on to say that evidence provided by Macmillan “supports the view that all forms of chemotherapy may cause substantial debilitation” and severe side-effects.

The rewritten plans presume that any individual undergoing any form of chemotherapy or site-specific radiotherapy should be in the Support Group, without them having to undergo a medical assessment.

It says that in “a small number of cases, where the evidence indicated that the debilitating effects might be limited” individuals may be invited for a medical assessment to judge their fitness to work.

But Macmillan said it was still not happy with the proposals.

As well as widening the eligibility, guaranteed entitlement to entry into the Support Group has been amended to a “presumption” based on “a paper assessment”.

But Macmillan are standing firm, saying the original idea “was an erosion of the legal protection given to patients and it was unclear what the paper assessment would involve”.

“We don’t agree with this proposal and remain of the view that automatic entitlement is vitally important for cancer patients receiving treatment,” the charity added.

What you can do

If this affects you

  1. Keep an eye out on Macmillan’s website for updates   www.macmillan.org.uk   0808 808 00 00
  2. Or contact Age UK  www.ageuk.co.uk       0800 `69 6565
  3. Keep an eye out for petitions – from Macmillan, 38 Degrees, etc.  The cowardly Government are learning to hate these!
  4. Let your MP know you are worried.

 

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Will Skype and Virtual Visits replace old-fashioned doctors?

Help! 

I don’t like the way I am being treated

 

 

Latest article in the prestigious

Journal of Oncology

fills me with gloom.

 

In fact -I am so mad I might write the whole article in UPPER  CASE.

 

We all laugh at the fact that some doctors would be only too happy if they didn’t have to meet patients – now it looks as if a new idea could make this reality.

Reuters Health has been investigating if patients would like virtual follow-up appointments.

And I am glad to say found breast cancer survivors gave the idea a resounding NO-NO.

Is this future going to be part of your care?

Some researchers believe so-called virtual visits might be an option for continuing care, as the number of cancer survivors grows, and cancer doctors are stretched increasingly thin.

However, few people said that having a follow-up appointment with a doctor or nurse over the phone or online instead of in person would ease their stress and worry.  The NHS, with its ten-minute follow-up appointment system would obviously welcome this idea with open arms, BUT IT IS TIME PATIENTS CALLED A HALT and demanded ME time.

“There’s been a lot of interest in introducing virtual visits into medical oncology follow-up,” said study co-author Dr. Erica Mayer, from the Dana-Farber Cancer Institute (DF) in Boston.  Now, I like Dana-Farber;  they were incredibly helpful to me when I was first diagnosed, and produce brilliant information.  And their latest research hopefully nips in the bud ideas medics have to keep us at arm’s length.

Reasoning behind idea

“What we had in mind was a way in which patients and physicians could communicate with each other and discuss routine non-urgent follow-up care in a (way) that would be safe and acceptable.”

Mayer told Reuters Health that phone or online appointments wouldn’t be a replacement for physical exams or cancer screening that’s done during in-person visits, but rather a way for survivors who are doing well and might live far from a clinic to have regular, convenient check-ins. It would also ease the strain on the medical system, Mayer said.

Er – really?  Tell that to NHS Administrators, gleefully latching on to any way to save their budgets from actually having to spend it on patients.

I reckon give the new breed of  ‘commissiong GPs’ an idea that might save them money, and us patients could find outselves frozen out.  Last week there was a proposal that elderly people have regular tests done by phone link, rather than visiting the surgery – which would mean many elderly patients being denied any human contact.  This idea of virtual consultations seems to be similar.  And I DON’T LIKE IT.

According to DF, Survivors said that a visit to a cancer doctor would be the most likely to decrease their appointment-related stress and their worry about cancer. The most participants — almost 80 percent — pointed to those appointments as likely to increase their survival.

More than half of people also said that visiting a primary care doctor or nurse practitioner would decrease their disease-related worrying and would likely extend their lifespan.

But survivors were much less confident about benefiting from a virtual visit.

  • 12 % of survey participants said communicating with a cancer doctor or nurse on the phone or online would relieve their stress about the follow-up “visit.
  • 20 % said it would decrease their cancer worrying and improve their survival.
  • More survivors said the visits would increase their stress and worrying and likely cut their lifespan.

“When patients first hear, ‘Oh, we can do a follow-up from your house, you don’t even have to come in,’ it might seem like they’re not getting as good care,” said Dr. Christine Hill-Kayser, a radiation oncologist at the Hospital of the University of Pennsylvania in Philadelphia, who was not involved in the new study.

The idea of the virtual visit is still a pretty new one, Hill-Kayser said, and the phone or online sessions — using Skype, for instance — aren’t something most survivors have access to yet.

“We’re certainly working in an environment with limited resources. It’s sometimes difficult to schedule follow-ups as much as we’d like to with all our patients.”

But as a patient, I would find a consultation ‘at a distance’ would make me even less likely to open up and express fears – and it’s these fears that worry me and need to be discussed to put my mind at rest.

Hippocrates advised trainees to watch and be aware of patients and their body language, and I can’t see that anything has changed in the last 2,500 years.  He was a wise old bird. 

SOURCE: bit.ly/ur2jbD Journal of Clinical Oncology, online December 12, 2011.

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Britain Against Cancer Conference disappoints

Expectations were high ~


but didn’t deliver

 

Last year the audience was full of enthusiasm at the APPGC Britain Against Cancer Conference.                                      Delegates participated, learnt, exchanged views and sessions provided plenty  of  food for thought.

But  this year the formula has changed.  Instead of lively debates, we were asked to ‘submit questions in advance’ and had to endure the one-hour-get-it-all-in-module.

This is so 1980s, and it’s about time Macmillan (who now run this group), realised that people who come to their conferences don’t need trendy management tricks.  These are stuck in a time-warp, but unfortunately still used by some companies to run training courses for charities etc.    The formula worked 30 years ago, but we have moved on from there, and people no longer need encouragement to participate – it’s keeping their questions short that is the problem.  Una used to run this conference, and she realised that when you gather together MPs, Charity Executives and informed patients, you are going to get a useful dialogue going by just letting them get on with exchanging ideas.

Patient Voice in local, regional and national NHS decisions.

Baroness Masham was an excellent chair for this session, and her speaker was Angela Coulter from Dept. Health at University of Oxford.  But they were both up against time restrictions, and when the audience tried to ask questions the Baroness regretfully had to say there wasn’t time.

Ms Coulter produced an up-beat analysis of what the Health Bill might do, showing a positive side to the pages of blurb, which made some sense. She said she thought nothing much would change in the NHS, (was this because she knows the NHS doesn’t like change?),  and “Patients are the greatest resource we have”.

Talking over the clauses in the Bill, she said there should not be an exclusive focus on a single disease;  what patients want is well-co-ordinated holistic care.  Politicians haven’t done much explaining about what’s going to happen with this Bill, and Lansley hasn’t made this clear to NHS staff – yet.

Then, when we would all have like to question Ms Coulter, who seemed brimming with sensible advice, we were split up into the dreaded round tables to come up with ‘ideas’ .

We were given case studies to read (impossible – there was no time), and Breakthrough Breast Cancer,  who had been asked to organise the session, admitted they had been told to keep everything short – but then told they had to include speakers, workshop session, case study and wrap-up – all to be completed in 60 minutes.  This was a complete waste of Breakthrough’s time and expertise, and did no favours to the knowledgeable audience, all of whom could have been better employed questioning the Baroness and Ms Coulter, and gathering some of their expert opinions.

After all, the Baroness was off that afternoon to put forward an ammendment to the Health Bill in the House of Lords  – which we would have all liked to hear more about from someone at the sharp end.

There were murmurs around tables about ‘not enough time’.  One can only imagine that the huge Macmillan HQs cupboards are bursting with all the sheets of A1 paper they love to distribute for table ‘hosts’ to fill in. But come up with anything concrete – no.  Let’s hope that Macmillan will throw out the old formulas and bring in up-to-date debates, similar to previous conferences.

Panel Discussion

The afternoon started with a panel discussion from Prof. Sir Mike Richards, Prof. Steve Field and Dr. Frank Atherton, President of the Assn. of Directors of Public Health.

Mike Richards repeated the usual mantra about how we lag behind Europe in cancer survival.  Well, it’s about time the Dept. Health, National Cancer Action Team and Uncle Tom Cobley got on with doing something – not just talking.

Eurostar runs a slick service to the Continent;  there are plenty of low cost airlines zipping across the 21 miles of Channel, yet no-one seems to be running any exchange programmes – let alone asking patients if they would like to go for treatment to see and compare what is different and what could easily be copied.

Because treatment in Europe is not all about expensive drugs or equipment (although these are available), but much more about the approach to treating patients holistically.

But during the panel’s speaches, instead of being told of ‘goodies’ that were coming on-stream, we were treated to old but shocking statistics, such as  a quarter of cancer patients present as Emergencies;  plus the fact that GI Endoscopies were at the bottom of the table when it came to investigations.  We know this – let’s know what’s going to improve from a patients’ point of view.

The conference was supposed to be about Achieving Quality, and Getting cancer services right in the new NHS.  The only practical advice seemed to be Dr. Atherton’s four points:

  1. Health and Wealth Boards – get them to focus on cancer
  2. Better information about benchmarking
  3. Need to look at pathways in much greater degree
  4. and importance of Networking

The comments from the platform could have spiked a lively discussion.  Instead the audience had been asked to submit their questions in advance, and organisers had chosen selected ones.  Afterwards a patient went up to Mike Richards to say she felt frustrated.  She heard a lot about ‘patient involvement’, but whenever she tried to get involved, she seemed to be sent off in another direction, or not given any details as to how she could get involved.

Exhibition

The exhibition was well thought out, with interesting tables and staff eager to talk and inform.  I met Krish Shastri, the insurance guru, and we had a long discussion on how neither medical insurance companies nor oncologists let patients know that their insurance for cancer-related illness may well run out after five years.  Leaving patients floating around, either paying for themselves, or having to find ‘new’ doctors as their doctors were seeing them privately.

There was a real buzz in the room, and it showed that when you get a large group of intelligent people interested in cancer, there is a lot to be learnt from listening to them, and debating.

Let’s hope the conference goes back to that formula next year.

Deja Vue

Chillingly, reading my report on this conference last year I had mentioned that Andrew Lansley had placed great emphasis on ‘using the voluntary sector’ to a much greater extent.  Well, it was evident that Macmillan has got into bed very firmly with the Dept. Health/NHS – but is this what the volunteers who support this great charity really want?

 

 

 

 

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What's new to come out of San Antonio breast cancer conference

The good news is it’s official ~

 

Drug side effects can be devastating

 

For years, patients have complained doctors don’t seem able to help them with side effects of oancer treatment.

Side effects come from radiotherapy, chemotherapy or hormone therapy:  all can be devastating.

So why do so many patients find it difficult to get doctors to give advice about mitigating the problems?

One reason aired at the recent San Antonio Breast Cancer Symposium.  Researchers reported doctors may have been going on old data that reported only 5 % of patients experienced moderate to severe side effects while taking cancer drugs.  Using these old stats, may well be why patients today report that doctors can sometimes brush aside their problems with side effects.

Now, the good news for patients is that at the latest Symposium, presentations given in front of thousands of the world’s top oncologists proved what patients have known all along:  side effects of cancer drugs can be devastating.

What is San Antonio?

The San Antonio Symposium is where, every year, the latest research on breast cancer and its treatment is unveiled;  where eminent practitioners  discuss their latest procedures in front of their peers, and from where the latest breast cancer treatment options eventually filter down to us, the patient.

So when, as reported at San Antonio, a recent study of the number of women who said their cancer drug side effects were unbearable was much higher than originally reported – oncologist will listen.

Google shows this story is going global – and coming to a medical journal near you.  So if you have found medics don’t show much sypmathy – you have up-to-date research on your side!

Side Effects

Now we’re appreciating that there’s a significant gap between

  1. patient-reported symptoms
  2. and provider-reported symptoms

Lynne Wagner, of Northwestern University of Feinberg School of Medicine  said, “that gap widens when we’re talking about more subjective symptoms, things like pain or fatigue that only a patient can report.”  For instance, nearly 35 % of women reported severe joint pain.

Wagner said no matter how unbearable women find a drug’s side effects, many will not report their troubles to their doctors for fear that they will be viewed as complainers or as difficult patients. On the other side of the table, doctors with waiting rooms full of patients may neglect to devote time to probing a patient about her experience with a drug.

“I think what this would tell us is, you do need to make time, you do need to tell your patients that it’s O.K. to mention these side effects to you, and that they can expect some side effects from these drugs,” said Dr. Jay Brooks, chairman of hematology and oncology for the Ochsner Health System in Baton Rouge, La.

“Patients often do not volunteer that kind of information. It’s up to the doctor or nurse to directly ask them,” said Dr. Harold Burstein, a breast oncologist at Dana-Farber Cancer Institute in Boston. “And it’s important to do that because they may be able to take an alternative treatment that doesn’t have those side effects.”

 

Aromatase Inhibitors

Aromatase inhibitors have been shown to improve a woman’s chance of survival, after breast cancer, by 30 %, a powerful reason to continue treatment. But doctors say reports of intolerable side effects are equally important to consider.

“These pills have very profound benefit against breast cancer, but if people don’t take the pills, they don’t work,” Brooks said. “I can tell you that this study will change my perception to ask questions of patients as we’re treating them.”

You are not alone

For patients, all over the world, who talk about side effects but find doctors may not seem sympathetic, this study is something to show them – and repeat that the study shows were are complainers;  we really do have major problems.

So for cancer patients whose doctors won’t/don’t believe them  – just go through to web address www.sabcs.org/PressReleases/index.asp#top

There are a whole range of easy-to-understand releases, covering many aspects of treatment.  Print out those that are relevant and show to your Oncologist.  They can’t sneer – this comes right from the top.

More – and more

Jeremy Moore of the AACR (American Association of Cancer Research) sends out the most lucid and well-written press releases direct from the San Antonio Symposium, to doctors all over the world.  Our Dept. of Health could learn a lot from him!

So if you go to  http://www.sabcs.org/PressReleases/index.asp#top

Up comes a long list of the press releases to come out of this Symposium.  And I can assure you they are written in patient-friendly English;  Jeremy is clever enough to realise that using too much medical jargon (which can be different in every country) makes life difficult for oncologists searching the web from all over the world.

Go down the list  and you will see different topics listed.  There are bound to be some that refer to your type of cancer and might come up with solutions.

  • There are several papers this year on breast cancer and diabetes, and this is certainly something our oncologists should be looking at.  As Ash Soni (member of the Govt’s Future Forum) says, oncologists must treat patients with diabetes better.
  • There is the latest on the type of diet that might better suit cancer patients.
  • And why many women don’t undergo Breast reconstruction.

News from elsewhere

A new analysis has found that breast cancer survivors may experience problems with certain mental abilities several years after treatment, regardless of whether they were treated with chemotherapy plus radiation or radiation only. Published early online in CANCER, a peer-reviewed journal of the American Cancer Society, the study indicates that there may be common and treatment-specific ways that cancer therapies negatively affect cancer survivors’ mental abilities.

Previous research suggests that chemotherapy can cause problems with memory and concentration in breast cancer survivors. To compare the effects of different types of cancer treatment on such mental abilities, Paul Jacobsen, PhD, of the Moffitt Cancer Center and Research Institute in Tampa, and his colleagues examined 62 breast cancer patients treated with chemotherapy plus radiation, 67 patients treated with radiation only, and 184 women with no history of cancer. Study participants completed neuropsychological assessments six months after completing treatment and again 36 months later, which is further out from the end of treatment than most previous studies of this type.

The study confirmed that chemotherapy can cause cognitive problems in breast cancer survivors that persist for three years after they finish treatment. In addition, the investigators found that breast cancer survivors who had been treated with radiation (and not chemotherapy) often experienced problems similar to those in breast cancer survivors treated with both chemotherapy and radiation. They did not find that hormonal therapy (such as tamoxifen) caused cognitive difficulties.

“These findings suggest that the problems some breast cancer survivors have with their mental abilities are not due just to the administration of chemotherapy,” said Dr. Jacobsen. “Our findings also provide a more complete picture of the impact of cancer treatment on mental abilities than studies that did not follow patients as long or look at mental abilities in breast cancer survivors who had not been treated with chemotherapy,” he added.

At last what we are saying is being taken seriously!

Article: “Cognitive functioning after cancer treatment: A three-year longitudinal comparison of breast cancer survivors treated with chemotherapy or radiation and non-cancer controls.” Kristin M. Phillips, Heather S. Jim, Brent J. Small, Christine Laronga, Michael A. Andrykowski, and Paul B. Jacobsen. CANCER; Published Online: December 12, 2011 (DOI: 10.1002/cncr.26432).

Author Contact: Patricia Kim of the Moffitt Cancer Center and Research Institute’s media relations office at patricia.kim@moffitt.org or +1 (813) 745-7322.

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Jennifer Saunders admits Tamoxifen hardest part of cancer treatment

Tamoxifen troubles happen to us all

 

 

 

 

JENNIFER Saunders, the Ab Fab star,  has spoken out about her battle with breast cancer , and revealed it brought on the menopause and depression.

The Absolutely Fabulous star (seen here with co-star Joanna Lumley), had six months of chemotherapy at an oncology unit in London’s Harley Street.

She said: “I found the Tamoxifen the hardest thing because it changes you. It’s like suddenly becoming older.

“You feel fagged out, you lose your motor and it makes you feel depressed. You have that ‘I want to go to bed and sleep for ever’ kind of feeling. Normally I have the energy to get up, get ready and do something, but I wasn’t starting my days until maybe 11 or 11.30, even though I was awake.”

So it’s not only us that suffers

Awful though it must have been for the star, it is slightly reassuring to realise that, even when you are someone as fabulously talented as she is, when it comes down to it – we all suffer.

At the same time as fighting cancer, Jennifer said the Tamoxifen also blocked her production of oestrogen and brought on the menopause. Suddenly she had hot flushes, cold sweats and mood swings to handle, too.

Speaking to promote her return as over-the-top Eddy in the Absolutely Fabulous festive special, which is on Christmas Day on BBC1 at 10pm, Jennifer praised her husband Adrian Edmondson and their three daughters – Ella, 25, Beattie, 24, and Freya, 20 – for helping her through such a difficult time.

She joked: “Ade was shivering in the house the other day and actually pulled a sheepskin over himself. I said, ‘Why don’t you turn the heating on?’ And he said, ‘Because you’re hot all the time. And then cold. And then hot. And then sweating, and then not sweating’.

“Ade was all right, actually. He’s a sort of rock in that he never gives anything away and he’s very good at letting you get on with it. I think he was very strong about that. And the girls were brilliant.

“Freya was at home most of the time and was fantastic. And I have really good girlfriends who’d look after me and sit with me in the chemo sessions.

Black Humour

We all know those bursts of black humour, when only someone who has cancer can understand the funny side of treatment – but we are not alone.  As Jennifer says, she thought “quite a lot of it was hilarious”.  In true Ab Fab tradition, she says she was often heard to say, ” I need a drink! I need more chemicals.”

Read more: http://www.mirror.co.uk/celebs/tv/2011/12/06/jennifer-saunders-on-her-breast-cancer-battle-that-brought-on-menopause-and-depression-115875-23613030/#ixzz1fjWXWLWM

What future is there for NHS?

Food for thought

~ for the Future

The current malaise in the NHS is dragging patients down.

They say they are fed up with nurses and doctors looking grey, over-worked and dispirited.

  • And even more fed up with longer waiting times,
  • being told the post-code lottery means they don’t get a drug,
  • or shuffled laboriously through the system to get what should be simple tests.

It is OUR NHS – isn’t it about time we said “enough is enough”?

 

Brave Soul

Dr Kailash Chand, a GP in the north of England, has started a government email petition.   If he gets 100,000 signatures, this automatically  forces a debate in Parliament on the Health and Social Care Bill.

No doubt his bosses won’t be pleased with him (the Dept. of Health doesn’t like those who speak up), but if you want to support him click through to

https://submissions.epetitions.direct.gov.uk/petitions/22670

 

What else?

It is time to challenge the myth/mantra repeated time and again by NHS staff – French care may be better but it is more expensive.

When you compare like for like (i.e. if you take out of the equation all the private rooms, home care, massages etc. the French receive ) and work out who pays what – the French and ourselves are paying pretty much the same.

Perhaps we could go back to a report, written in 2008, for the think tank Reform.  What Prof.Nick Bosanquet, Andrew Haldenby, Laura Hurley, Flavia Jolly, Helen Rainbow and Prof. Karol Sikora wrote is worth re-reading, as a basis for patients to challenge just what is the NHS and La La doing with OUR  money?

The typical UK patient  pays around £2,250 per individual per year, so that everyone is covered by the National Health Service.

So the thoughtful report should be required reading for Cameron and Lansley;  instead of repeating “European healthcare is better”, and leave it at that – perhaps instead of devising all his time and money wasting plans, Lansley would take on board what the Reform Report says – and ACT on it.

So why change?
Over many years, Reform says academic studies have pointed to a gap in performance between the UK and other countries.

Health outcomes are difficult to measure, but the UK delivers a poor level of social equity despite having universal provision.  Other countries have systems that rely on part tax funding – part personal insurance funding for health care.

International options point to two key conclusions:

1.    Drawbacks of voluntary coverage concern both effectiveness – due to the problems of adverse selection – and equity. The only major developed country which operates voluntary health insurance is the USA, and that country is itself divided as to the wisdom of the policy. The NHS does provide cover to every UK citizen (although not for every condition), and that is a valuable strength.
2.    In recent years new insurance-based systems, in particular the Netherlands, have been created. Systems with strong insurance characteristics, such as France, Germany and Switzerland, are reforming in order to manage demand and continue to deliver a better standard of healthcare than the UK. The UK looks out of line with global developments.
The Prime Minister claimed that the NHS was “the best insurance system in the world” because, in systems with greater insurance elements, the costs of healthcare could bankrupt families on normal incomes.

Reform says people living in countries such as France, Germany, Switzerland or the Netherlands have the same kind of protection as the Prime Minister described, including cover against the very high costs of catastrophic illness. The task for the NHS is to combine its universal base with the focus on the patient evident in other countries.

Insurance incentives have the following advantages:

> they provide reasons for individuals and authorities to value the long term;
> they achieve greater value;
> they incentivise individuals to participate in their own healthcare;
> they remove unequal access to treatment; and
> they de-politicise healthcare.
Insurance-based systems are closely focused on individual patient outcomes as healthy patients cost less. This means a focus both on general well-being and on ensuring customers that do become ill recover in the shortest period of time.
In other words, an insurance-based health system encourages preventative medicine – something sadly lacking in the NHS.

Ending the postcode lottery
In insurance based systems patient entitlement is defined, and patients are aware of what drugs and treatments they have access to. This empowers patients and makes the system inherently patient centred, and would overcome the current difficulties in the NHS where some patients in one area have access to treatment while other do not.
The key elements of insurance success
We have seen the advantages of insurance incentives. However, there are a number of crucial elements that are required to make an insurance system work.

Firstly, it is important that a sufficient range of providers are able to operate in the market. Secondly, the core system of compulsory insurance needs to cover the vast majority of health problems to ensure that it is for only a minority of conditions that people are buying healthcare for through self-payment or supplementary insurance. Thirdly, people have to be incentivised to prevent abuse of the system. Finally, information and capability to use that information must be present.

Incentives to stop abuse of the system
People may have an incentive to abuse an over-generous system of provision.

In 2004 the average French GP prescribed drugs worth €260,000 a year and the French used three times as many antibiotics as the Germans.  The French have tried to tackle this problem of overtreatment by requiring co-payments for many drugs and GP visits.

One academic has estimated that between 20 and 30 per cent of healthcare funds in America go toward unnecessary treatments which can in fact have a detrimental effect on public health.

UK families already spend £1,600 per year on healthcare
Reform research shows that the average household invests significant amounts privately on their own health. At a conservative estimate the average household is spending £1,200 a year privately on core areas of healthcare, including private hospital treatment, dentistry, optometry and over the counter medicines.

Alongside this spending individuals are also spending a considerable amount a year on improving their own lifestyles through diet and exercise.The average family spends around £400 annually on areas such as gym and sports club membership as well as complementary therapies.

The basic healthcare package in France, which includes the cost of social security contributions and the cost of a basic supplementary insurance, is £2,021.46.

This is a comprehensive package which covers the cost of consultations, pharmacy, dental costs, surgical costs, hospital stay and ambulatory transport amongst others. Furthermore, the French state currently guarantees patients access to all cancer treatments, including experimental ones.

The option to top up for luxury services or rare drugs
Supplementary insurance would cover a wider range of health treatment and pharmaceuticals that are not available in the core package. Supplementary insurance could be purchased for an additional charge from the Health Protection Providers.

Based on supplementary insurance in other countries, examples of cover might include:
> Additional surgery e.g. additional eye surgery during a cataract operation to alleviate the need to wear glasses.
> Drugs not available in the core package.
> A higher standard of hospital accommodation, such as a private room.

Competition
An essential element of a system that acts as an insurer is competition. Competition drives efficiency and quality of services for patients.   However, competition has to be on a level playing field, and signs are that current plans for commissioning services won’t take into account all the factors.

Role of government
Now, this is where it gets interesting.  I can never understand how a politician, with no training whatsoever, can suddenly find themselves managing a health budget of billions.  No company would run this way.  Yet the NHS expects a rookie Minister to know how to commission health services.

Reform suggests the role of the Government would be considerably reduced.

It would have a regulatory function to ensure that all Health Protection Providers and service providers were of sufficient quality. Further tasks would include allocating contracts for emergency services and deciding the budget of the service on a five year cycle. The reduction of this role would eliminate the need for regional agencies i.e. Strategic Health Authorities.

This would depoliticise the running of the health service, and remove it from the political cycle.

The authors
Nick Bosanquet is Professor of Health Policy at Imperial College London and Consultant Director of Reform.
Andrew Haldenby is Reform’s Director.
Laura Hurley was an intern at Reform during the summer of 2008.
Flavia Jolly was an intern at Reform during the summer of 2008.
Helen Rainbow is Reform’s Senior Researcher specialising in health.
Professor Karol Sikora is Medical Director of CancerPartnersUK and a consultant in cancer medicine.

Report costs:  £20.00
Reform, 45 Great Peter Street, London, SW1P 3LT
T 020 7799 6699
info@reform.co.uk
www.reform.co.uk
ISBN number: 978-1-905730-12-4

La La's latest ideas to reform the NHS

Or how the Coalition

keeps paper companies

in business

 

One wonders what Soviet 5-year plan s La La Lansley has in mind, when he broods in his ivory tower?

Obviously the idea of production line medical care is uppermost in his mind, and production lines, of course, found great  favour with the Stalinist  elite.

La La’s latest ‘brilliant’ idea is to plug in patients with chronic conditions to a high-tech IT system, and monitor them at a distance.   So doctors will have even less contact with real people.

And elderly patients, probably living alone, not seeing anyone from day to day, week on week, won’t even have an outing when they toddle round to see the Practice Nurse.  Instead they will press a button; all their data will go off down a cold line – with no-one seeming to care about them.

Just what the new NHS wants – no human contact.  Instead of a smile from a friendly nurse, data can be read off a screen – thus enabling medics to practice at a distance from their patients.

This ‘plan’ is estimated to cost £1.2 billion year.

What’s wrong with District Nurses?

If the NHS can find that amount  of money for distant medicine, why can’t it find the same amount and invest in more District Nurses?

£1.2 billion could fund a vast army of them, and a cheerful person coming to visit an elderly person once a week will ensure they aren’t forgotten.  At the same time a pair of human eyes will be able to suss out if a patient is getting adequate nourishment; if their environment is clean; or if they are neglecting themselves.  Which a machine can’t do.  Dsitrict Nurses are a core of medicine abroad, and most Europeans are paying roughly the same amount as we do for medical care.

More bright ideas

If ‘care at a distance’ doesn’t get you scratching your head – La La has come up with an even more cunning plan :  his 60-step-plan-to-restore-faith-in-the-NHS.

Doesn’t this smack of the tractor production lines that produced thousands of machines which were designed by committee – and never worked?

Having said the Coalition were abolishing targets and paperwork, La  La is now promising “new goals for hospitals based on quality of service for patients”.

Can’t you just see the extra tick boxes, forms etc. nurses are going to have to fill in to reach these goals?

60 steps

Someone – or several people – is going to have to ask patients 60 questions.  La La, in his Mad Hatter mode, obviously thinks these will present themselves out of thin air;  we know better.

  1. Premature Death – relatives will be asked 21 questions
  2. Quality of Life for people with long-term conditions – This time 14 questions
  3. Helping People Recover after ill-health or injury – 9 questions
  4. Patient Experience  –  8 questions
  5. Treating people safely – ah yes!  Elf ‘n Safety has to play a part asking 7 questions

La La doesn’t seem to understand that TLC from a human is some of the best medicine to be had.  Instead, he follows the previous Government’s mantra of  ‘evidence’, and one can see the paper mountain this is going to create.

Of all the questions in the table above, one wants to ask Shouldn’t hospital treatment be addressing these anyway?

Well – at least now we know La La’s latest ideas to reform the NHS.  Am I alone in wishing he and the Dept. of Health would just leave the NHS alone to get on with its job?

Luxury Christmas presents for friends with cancer

Gift Hampers 5

Flickr

Cancer patients love luxury too!

 

Just because your friend has had to exist in a sterile environment, doesn’t mean they won’t appreciate luxury – and in spades!

So what can you give them?

As a patient, one often has the specialist nurse who frowns on anything that has the slightest touch of glamour!  Many is the one who has grabbed a skincare product to search for any suspect ingredients.

I try to tell them that any chemicals manufacturers might include, wouldn’t even come within a mile of the poisons that get pumped into our bodies during cancer treatment – but all I get is sour looks!

Or else they tell you piously, “I couldn’t possibly recommend anything commercial”, and get cross when it is pointed out that drug companies are some of the most profitable companies in the world!

But don’t let this put you off.  Cancer patients LOVE getting gifts, small or large.

A few ‘rules’ to help in choosing a present

  • If a product is scented – either buy something your friend already uses, or look for the ‘old’ flower perfumes. Lavender and rose in particular were often, and still are, used as antiseptics.
  • Most manufacturers have taken parabens out of products because of some dodgy publicity.  However, if you ask a nurse to show you ingredients for IVs, often they contain parabens!  Or ask if they recommend Blueberrries – apparently they contain parabens!
  • However, it makes sense to avoid the ‘chemical’ designer scents that are around, particulary those ‘celebrity’ perfumes that are produced just for Christmas market.  These can sometimes produce allergies.  Look for old-fashioned ones, that have stood the test of time.
  • If anything has a screw top, or is difficult to open, try to make sure the person’s hands are strong enough to cope.

What’s available?

I am NOT medically qualified, so if your friend is still in isolation during treatment, please ask a doctor or nurse what is suitable.

All of the following companies take great care with their products, and most cancer patients enjoy using them.  Ask the demonstrators at major in-store beauty counters if any of them do voluntary work at hospices;  they can tell which of their products are most suitable, but in the meantime here are some of the best products to help ‘cancer drug skin’.

And if you live outside the UK, and want to order online, delete co.uk ending and try .com – if that doesn’t work Google!

Avène

Avène is one of those French companies that developed clinically-trialled products designed to help problem skins.  If only our dermatologists in Britain would go over to France and see what their doctors prescribe (these or similar products), we might get more help with skin problems.

The basis of all their products is the thermal waters that gush out of the mountain;  their laboratories are constantly seeking new solutions to skin problems, and they undertake numerous clinical trials in hospitals.

Anyway, they make a whole range of suitable products;  best thing is to either find a major chemist that stocks their products, or go online and see what is available in your price range.   www.avene.co.uk

Clinique

This is the ‘medical’ arm of the great Estée Lauder empire;  the company that started pink ribbons and has done an enormous amount for cancer care.   Currently I am enjoying using their Comfort on Call cream, which is also allergy tested, and described as a relief cream.  This means it is just right to smooth out all the bumps and rough skin we get as a side effect of drugs – darn them.

Another good cream is their Moisture Surge – which does exactly what it says to dried up faces!  Bliss!  Most of their creams cost around £30 – £35, and are very good value for money.

The also make eye serums, and their famous Dramatically Different Moisture Lotion – a staple of the Look Good, Feel Better beauty boxes handed out to us when we have those wonderful make-up lessons.  www.clinique.co.uk

 

Elemis

We should be very proud of this all-British company, as they made superb creams for us.

And each Christmas, they gather together gift sets with all the goodies that we love, in attractive packs.

Each pack aims to help with a specific problem, be is rough body skin or dull facial problems;  then they offer several suitable products at a knock-down price – saving a lot!

They are famous for Bath products:  foams, washes and body lotions in gorgeous scents.

They make very good face creams:  for cleansing, toning, moisturising and for an extra boost at night.

And also have a marvellous treatment spa at their HQ in Lancashire Court,  just behind Bond Street.  If you want to give a really special present, give a voucher for a treatment here.

Living Nature are really natural, organic products, made in New Zealand.  80% of their native plants are indigenous and many have remarkable bioactive properties. Sourced from forests, lands and seas, Living Nature’s active ingredients come from the most potent of these unique plants.

And the really nice thing is that these products are endorsed by New Zealand’s cancer organisations.

They make a range of products, packaged in their distinctive eco-friendly style – find them on  www.livingnature.com

 

Neom makes body oils that celebrities really use.

And rubbing in body oil is less ‘sticky’ than using body lotions, especially for someone who hates using skin preparations!

There is a gift box containing all five Neom Bath Oils (Lavender, Jasmine, Rosewood etc.)  in small trial sizes, which pack a massive ‘feel good’ aroma whenever you use one.  £15.

Now their latest oils are in a spray bottle, and I have been trying out the  ‘Tranquility’ Organic Body Oil, containing Lavender and Sweet Basil.  This really does calm you down, and might be just the present for someone who has difficulty sleeping – have a bath at bedtime and spray it all over – bliss!

NEOM say their “Luxury Organic Bath Oils are made with a vitamin E packed certified organic Safflower base & Jojoba to leave your skin soft and toxin free;  if you use them during the day your skin really glows and feels good all day.  For once, the hype says what it means.    www.neomorganics.com

Peachykeen is a Hale, Manchester company that specialises in organic body products,such as their super Body Butter.

Containing coconut oil and ginger, this is what I would best describe as a mega-zapper for the dreadful dry skin one gets – particularly when you first go on certain drugs.  You take a teaspoon of the butter from the jar, rub it in your hands and it soon becomes almost liquid, soothing and softening as it goes.  £22.

Suitable for vegetarians , and especially useful in the winter, when skin needs an extra boost to counter winter winds.  www.peachykeenorganics.co.uk

 

Have fun – and don’t forget to buy something for yourself!

 

 

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