Monthly Archives: August 2010

Bullying on the NHS

NHS logo
Image via Wikipedia

Or what to do when Insurance costs too much

If the credit crunch is making you consider cancelling private medical insurance,  don’t let hospitals bully you.

As a courtesy I phoned my Oncologist’s office to say I would probably have to transfer to the NHS – but would pay to see him privately.

He knows my case (complicated because of side effects from hormonal drugs), and I have ongoing problems. So, as I realised that under the NHS clinic system I would not be entitled to see him automatically,  it made sense to stay with a Consultant who is familiar with my case.  And for this I realised I would have to pay.

I was told I could  not do this.

  • Either I was a private patient
  • OR on the NHS.

Top-ups This surprised me – I had been one of the group of patients whom Macmillan sent to the Dept. Health, to argue the case for patients being allowed to ‘top-up’ drugs.  The Dept.  had said anyone paying for drugs privately would have to pay all NHS costs.

We won our case; the Minister climbed down, and patients have the right to pay if they want a drug that hasn’t been approved by NICE, but are also entitled to any treatment that can be provided by NHS, without having to pay for this.

Official Ruling Due to the credit crunch and insurers charging higher premiums, I suspect many private patients will be in the same boat, so I asked a very helpful press officer at the Dept. Health what is the official ruling.  Back she came with:

“The Department has issued clear guidance that patients should not be refused NHS care where they choose to purchase additional private treatment.

“Patients who switch between NHS and private status should not be put at any advantage or disadvantage in relation to the NHS care they receive.  They are entitled to NHS services on exactly the same basis of clinical need as any other patient.”


  • Application of the guidance is a matter for local NHS organisations and clinicians.
  • The guidance makes clear that additional private care should be carried out separately from NHS care.  This means that if you want to have a private consultation, this will have to take place either in private Consultation Rooms in hospitals (only difference is they have better magazines and free coffee!)  or in Consultants’ rooms elsewhere.

Bullying I was threatened that IF I transferred to the NHS, I would have to see a doctor in Clinic; it was highly unlikely that I would see ‘my’ Consultant.

I was reminded  that I would not be able to choose which doctor I saw;  I would be allocated the next one available  (after what might be a long wait)

and appointments in Clinic were planned to only last ten minutes.

With all the complications I have from hormonal drugs, it would take all of those ten minutes to check the medication I am taking.  Then, being unfamiliar with my case, notes on complications from ongoing side effects would take far more than ten minutes to even skim through.

So, yet again one has the tiring scenario of fighting for our rights;  when one is exhausted from after-effects of drugs, why should we have the worry of phoning and writing to get what we are entitled to?

Surely Patients’ wishes should come first?  Especially when we would help hospitals save money?  With all the cuts in funding, a patient who pays to go privately is saving the NHS money – and they make money out of us.   My hospital charges private patients around £50 for ‘use’ of the Consultant’s room for a half-hour appointment – so they would lose that at least.

I found the person to whom I spoke on NHS Direct was extremely helpful in quoting what are our rights, in a clear and understandable manner.  And the nurse was indignant on my behalf – explaning what I am entitled to in clear language, and wishing me luck.

So don’t let ‘them’ bully you – you have the right to NHS treatment AND  to pay for private appointments.

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Death of Marsden Chaplain who was on Tamoxifen Ethical Committee

David Brown worked 24/7 supporting cancer patients

Many of you who were treated at the Royal Marsden will remember the Chaplain, David Brown, with fondness.  I know I do;  coming out of my Consultant’s with a bleak “I’ve never seen this before” comment on blindness that had crept up overnight, David took me under his wing.

He had been on the ethical committee that approved Tamoxifen;  without blaming the Consultant for his attitude, David said he had been told by other patients they had experienced this, and would look up Tamoxifen side effects in his notes.   A couple of hours later he phoned me, to tell me that the clinical trial notes verified that a small but significant number of patients had reported they had gone blind.  Then told me the good news was that as far as he could see they had regained their sight – but I must have this checked out.  Then helped me to find a French specialist working in London.

After that, I tended to phone David whenever I had a problem connected with cancer;  his knowledge was profound, and he was able to give me much helpful information of a non-medical nature, and ‘translate’ the long words with which I was bombarded.   His advice was always sensible and practical, and helped when I was feeling lost and bewildered.

He was the Senior Chaplain of the team that administered to patients in both the Chelsea and Sutton hospitals – and I would often see him on his way between  sites.  One day he told me he had been ‘head hunted’ by another hospital – but days later said he couldn’t change jobs, as this hospital didn’t have a Waitrose (very good food store) near by!

Because David loved cooking, and often invited my husband and I to dinner, held around a wooden table in his kitchen. One day he lifted up the table-top, and there was his bath.  Some staff accommodation in The Marsden was Victorian, and these baths had been placed in the middle of the kitchen to ‘modernise’ them.

Crockfords (the Directory for Chaplains, etc) gives the bald facts of  David Frederick Brown’s career:  Illinois University BA (1960). Seabury-Western Theological Seminary MDiv (1967). Deaconed and Priested in 1967. Curate Evanston St Mark (USA), 67-68; Curate Camarillo St Columba 68-69 and Priest-in-charge 69-70; Curate San Francisco Holy Innocents and Curate Grace Cathedral  70-75; Honorary Curate Battersea Christ Church and St Stephen (Diocese of Southwark) 78-83; Senior Chaplain Royal Marsden 83-00; retired 2000; permission to officiate in the Diocese of London from 2002.

What David modestly didn’t tell me was that he had done some of his hospital chaplaincy training at MD Anderson – probably the world’s foremost cancer hospital.

Some people might have known David for his dog, Nigel.  Living on the same street, David always admired our dogs (Border Terriers), and eventually we helped him choose Nigel – a typical Border.  Whether this was the right type of dog for a Chaplain was debatable.  David phoned one day to say he feared he had mental problems: “I keep on thinking I have bought meat, but when I go to the fridge it isn’t there”.

Eventually clues pointed to the fact that Nigel had learnt to ‘paw’ open the fridge, and take out bacon, sausages or whatever.  So David strode off to the nearest Mothercare, in his robes, to buy a child-proof lock for the fridge.  He used to take Nigel into the hospital sometimes, as a PAT dog, and I interviewed a patient for ‘Take a Break’ Magazine with an  incredible story.

One day Nigel was trotting at David’s heels, when he took off and barged into the room of a patient who had had her cancer return, and had literally turned her face to the wall and given up on life.  Until she told me, “Nigel gave me a lick, and from that moment I decided to live”.  Until she left the Chelsea site to move to the Marsden building in Sutton, Nigel was often to be found in her room – with the complete agreement of Sister.

Not many people knew that he came from one of the ‘inner circle’ families in the States, who not only knew Presidents but were god-parents to their children.  David never mentioned this, but occasionally he let something slip.  One thing he was very proud of was his decision to become a British citizen, and ever after he would chortle at the ease with which his dual nationality enabled him to by-pass airport immigration queues in both countries.

Sadly his career came to an end when the service which he had worked for tirelessly for over 21 years (he had given temporary help to the Marsden, before being appointed Senior Chaplain in 1983) let him down.  He had been under the ‘care’ of a Consultant at Hammersmith Hospital, and used to go for annual check-ups.  He knew he would have to have an operation one day, but was told at each check-up to wait another year.

One day he phoned me in great distress.  I had never heard David give any comment on his health, but this time he was in a state of shock.  “Ive just been told ‘you have three months to live’, and to go home and do your Will”.  The Consultant had told him that it was too late to do anything – sorry – they should have operated before’.

David’s sister Molly, when told this, said  “get your Axxx over here”.  She found an eminent surgeon, who said he would operate, and give David a 50/50 chance of surviving.  David said,  “we shook hands, and I said that was good enough for me”.  He did survive, but had spent all his life savings, and unfortunately shortly after had to retire from the job he loved because he still wasn’t fully fit.

Lord Cadogan, hearing of his plight, offered David a ‘grace and favour’ flat in Christchurch Street, and David moved in.  He loved this flat;  for the first time for 21 years he had a proper bathroom!

Long after he retired, people were still coming to David for help and advice – and at the end they did what they could to support him.  One young doctor was on his feet for twelve hours in the ICU unit at Chelsea and Westminster, monitoring the array of machines, willing them to keep David alive until his sister reached him from the States.  And Airport officials arranged for her to be met at Heathrow and whisked past the three-hour queues in Immigration.  They all wanted to do what they could.

In his will he left explicit instructions, and if these were not followed he threatened “to come back and haunt you”.  He didn’t want any flowers, but “do want you to have a good drink”.

His funeral will be at Christchurch (where he often took services) on Saturday, 4th September at 1 pm.  Afterwards his sister Molly wants to make sure David’s instructions are followed to the letter and everyone is invited for a ‘good drink’. etc.  Christchurch is just off Royal Hospital Road, at the Cheyne Walk end.

And Molly and friends have decided that instead of flowers, they would like donations in David’s memory to go to a fund to put up a plaque commemorating his work at Christchurch – the church he loved.  Send c/o The Vicar, St Luke’s & Christ Church, St Luke’s Crypt, Sydney Street, London SW3 6NH.

The picture above is of David as a young man.  I asked the Press Office at The Marsden to provide one of David in working garb at the hospital, but Belinda there told me “this is not in our jurisdiction”.  So I used the one above, knowing David would be tickled pink to be remembered as such a handsome youth!

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Iyengar Yoga aids cancer recovery

Iyengar Yoga
Image via Wikipedia

Yoga improves quality of life for breast cancer patients

University of Alberta research fellow Amy Speed-Andrews has examined how a specialized Iyengar yoga program for women currently in treatment for breast cancer, and who have completed treatment, makes a difference in their recovery.

According to Wikipedia, Iyengar Yoga, created byB.K.S. Iyengar,  is a form of Hatha Yoga.  It can use props, such as belts and blocks, as aids in performing asanas, or postures.  (See photo|).

However, you must ensure your teacher is properly qualified before taking a class, and that your doctor approves.  And also ensure that it is the right type of yoga for your health and condition.

Recently Madonna came under fire for following an advanced type of yoga, which practictioners claimed was not suitable.

At Alberta, women who are being treated and who’ve completed treatment for breast cancer say the yoga programme  made a difference in their recovery, according to Medical News Today.

In a study that extended over two years, participants answered questions about their physical and mental health. They responded to the questions when they started a 10-week session of a specialized Iyengar yoga program, and again when it ended.

After the yoga program, 94% of the women said their quality of life had improved, 88% said they felt better physically, 87% said they were happier, and 80% reported feeling less tired.

The women also said they felt less stressed, anxious and depressed, according to Speed-Andrews

Speed-Andrews, whose research was spread over two years, published the results in the journal Cancer Nursing, and intends to look at how Iyengar yoga affects the breast cancer patients’ joint range of motion, upper body strength and balance. In the future, she’d like to study how Iyengar yoga could help women with advanced-stage breast cancer.

This September she plans to add an additional component to her research once the next session of Iyengar yoga classes begins;  to examine how Iyengar yoga affects these women’s joint range of motion, upper body strength and balance. Speed-Andrews also hopes one day to study how this type of yoga might benefit women with advanced-stage breast cancer.

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Don't forget to pack skincare creams with sports kit

Your skin can have a workout too

When you exercise your skin needs

  • protection during sweety workouts
  • protection from chlorinated water
  • Using gym time to give your skin a boost

So amongst the trainers and track suits, make sure you pack skincare.

One of my favourite products sitting in my locker is Clinique Moisture Surge cream. It does what is says on the label, and I make sure I always pat it on to my face after the shower.

Whatever a swimming pool drops in to the water today, it still dries out your skin.  So you need to ensure that you wash this off, then carry out your routine to cleanse, tone and moisturise.

You know the ‘tight’ feeling you get after a swim?  You may think the water will have moisturised skin, but what is in that water isn’t helping.  Hence you need to make sure your skin is moisturised and your face benefits from your workout, as well as your body.

One good tip – when you go into the Jacuzzi, if it’s quiet and you aren’t made to feel stupid, take your jar of Moisture Surge with you, slap some on and then gently give your face a massage.  Using open palms work your fingers up and out – from the neckline to the top of your cheeks, then across your forehead.

Do this, and the warmth will help the cream to penetrate, and you will come out of the Jacuzzi with lovely smooth cheeks.

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Red hands caused by 5FU or Capecatibine

What patients say when they are on these drugs

A thread from a forum produced lots of information –                                                                                                                                              and a Warning about what can happen when you visit the USA!

One friend reported, “I was on 5FU combined with folinic acid.  A side effect of this chemo                               is rawness of the skin where it’s thin and membranous – such as in the mouth and nose.

Any extremities, such as fingers, toes – and the skin on the palms and soles of the feet – became  really shiny and very red – not red raw, and it did not hurt (but then I never had it on the soles of my feet).

I was given corsodyl mouthwash for the ulcers/rawness in my mouth.

But it wasn’t painful, and didn’t throb, and I didn’t notice anything until one day I saw a sales assistant’s expression when she saw my hands!!

I think if you are given 5FU for a long time then the redness is a more common side effect. I think 5FU causes the cells to renew really quickly, hence the shineness to the palms – but have to say – it made the skin on my face and my hair….fantastic – the one good thing!

They prescribed B6 for the redness – but I didn’t take it, as i felt I could cope with it ok. I’m looking at my fingers now, and I can see they’re slightly red – I can feel it a bit – it’s an odd thing in the fact that the fingers would be really red, you could see clearly where it started from the knuckles.

As the drug accumulated I became very intolerant of it – a good sign because it meant it was working if I had such bad effects from it! My having such profound side effects meant it was working.

Basically you read that soreness and redness of the palms of the hands and soles of the feet  (Sometimes known as palmar plantar or hand and foot syndrome), can happen when 5FU is given continuously or over a long time. It is temporary and improves when the treatment is finished. You may be prescribed vitamin B6 (pyridoxine), which may help to reduce this”.

Another Forum visitor says, “I was on Capecitabine, which I understand is a sort of oral version of 5FU.  I had hand and foot syndrome and was eventually put on vitamin B6.  There was a lot of redness and I lost quite a lot of skin from my feet, making walking (of which I do a lot) very painful and also lost the skin from the tips of my fingers.

However, my treatment finished in January and everything has now healed up and I still have fingerprints”.

Warning! However, others say they have ‘lost’ their fingerprints, so if you are visiting the States, or other countries with less-than-helpful Immigration officials, see the Travel and Insurance category.

Radical new medical website consults patients!

Eurocancercoms’ Survey launched to find patient information needs

Anyone who fumes at medics who think cancer affects our brain cells, or has been told, “you are ONLY a patient”, will enjoy filling in a new survey.

Eurocancercoms has launched a survey in five european languages, to uncover the types of information We want:  people with cancer, their family and friends.

The survey is targeting cancer patient and their families to get their opinions on the current state of information available and how it could be improved. The eurocancercoms project will go on to analyse the research, and develop strategies to make the best cancer information accessible to patients and the public.  Results of the survey will be hosted online.

If you would like to take part please click on the appropriate link below.

To complete the survey in English click on the link below.

Pour participer à l’enquête en français cliquez ici

Zur Umfrage in Deutsch bitte hier klicken

Per completare l’indagine in italiano fare clic qui

Para completar la encuesta en español dé clic aquí

Can’t wait for results – only fault I have found with survey is that we will keep on having to watch the Eurocancercoms website for results (but perhaps that’s why they aren’t emailing results to us!)

Welcome to eurocancercoms website

Welcome to eurocancercoms

This is an exciting new project looking at the issues surrounding communication and dissemination of cancer information across Europe.

The project is divided in to six areas, involving the whole cancer community from scientist to patient.

One thing that comes over very strongly is that this is an official project that is going to involve us PATIENTS.

The organisers have kindly given permission for me to post extracts,  so that readers can get a taste of what is happening in the Eurocommunity.  As the project develops, I will be posting extracts, or for the full flavour go to their website – I can promise you they have taken on board our distaste of NHS-speak, and it is written in English English! 

There are some very interesting video discussions, and it is shaming how well Danes, Dutch etc. speak our language – a lesson to some of our medics who try to blind us with NHS-speak!

To find out more, go to the companion story under eurocancercoms, then click on to their website:

Eurocancercoms website to give patients what they want – information

The Eurocancercoms partnership

Although this is an official project, what I like it is that those in charge use English –                                         not NHS or Politician-speak.

So read on – it is easy to understand!

The Eurocancercoms partnership is an ambitious 2 year FP7-funded European Commission project.  It aims to integrate cancer information and provide cancer information to the public, patients and cancer healthcare professionals.   (Notice – unlike so many medical initiatives, they include us!)

The ultimate aim of the project will be the complete website solution, signposting the reader to any or all European database, activity, project guidelines and clinical trials.

If you want to find out who are the people behind this project, look at the video on                                             

This shows Carol Maddock, who is my liaison contact, talking to seme very sensible European cancer specialists.  In the group is Dr. Lesley Fallowfield, who carried out the NHS survey which I quote freqently on how many of us won’t or don’t take hormonal pills, because of side effects.  So she understands us.  Although they are discussing one of the specialist topics (this particular one might not be of use to you), what comes over is that they are a group of experts who actually understand and want to help their patients.

Editing this website, I have found that when researching, if I have needed information from USA, Canada or Australia, this comes willingly, helpfully and very fast.  Unfortunately, to find similar information in Europe is often a closely guarden secret, and I have even had tovisit sources in France, Germany, Italy, Finland, Switzerland etc.

So to have the research already carried out and easy to read will be an incredible help,  and give British cancer patients access to excellent information, in English, at the touch of a button.

The scope of what we call ‘cancer information’ is vast, covering everything from patient information to on-line educational tools for clinicians and cutting edge informatic tools for cancer biologists working at the bench. This information is fractured across the virtual world; which means it is less integrated, of lower quality and less accessible to the European community. This project aims to reverse these trends and provide novel ways to turn cancer information into intelligence.

To set up  Eurocancercoms, each of the partners has been asked to work on specific aspects – either to provide analysis of the User Communities and / or Content, or the Technical aspects of the new integrating platform.

As Carol Maddock says, “although time and funding only allows us to focus on specific areas the project is open source, open access and entirely co-operative. If other partners both within and outside Eurocancercoms wish to develop site specific areas, communities or provide novel content and / or tools they are warmly encouraged to do so”.

At the end of the two year project they hope to  have delivered novel analysis and a new technical platform for cancer information in Europe.

What communities will Eurocancercoms be focusing on?

Through their partnerships with patient organisations and the various professional representational groups they  will focusing on patient information, a range of cancer healthcare professions including paediatric oncology, surgery, medical oncology and others, and also cancer policy makers in both the public and private fields.

As part of this project they are undertaking a number of key research / survey deliverables to understand better the state of the new technologies, the needs of the community and types of content required for a new e-cancer information paradigm. Some examples of the major research pieces being undertaken include:

  • Social Media and new e-tools for cancer information
  • The Paediatric Oncology community: policy and communication needs
  • The Cancer Surgery community: policy and communication needs
  • E-Information and the European Patient
  • A new paradigm for Cancer Clinical Guidelines
  • Role of Journalism & Public Dissemination of cancer  (I hope this will mean fellow journos will check more)

A full listing of ongoing projects will be posted on the Eurocancercoms web-site,                             and published as the project evolves.

The aim of the project is to engage as wide a community as possible to test out new concepts, content and approaches. We are also very welcoming of groups and / or organisations that wish to help us develop specific types of cancer, languages and / or bring in content please do contact us via email at:

Why June is popular for weddings, and other bath-time lore

Water dries out your skin, but it is essential

Have you ever wondered why June is the most popular month for marriages?

Lying in my bath this morning, I was thinking of this, and wondering if our ancestors would have bathed more often if they had the products we have – Heaven Scent gel was my choice, and it was producing flights of fancy.

We take a daily bath or shower for granted, and rely on products that have just been ‘invented’ to help us with skin problems.  But the average ancient’s skin would have been a mess of sores, etc. and you would have used lead paste to cover all the blemishes.  Ugh!

June was the month when you had your annual – yes, annual – bath, and were sewn into your new clothes.  These stayed on you for the next year (they were made of strong stuff);  only your collar or ruff might be changed when friends visited.

If you were very grand you might have an overdress or extra jacket or two – or if Royalty, they had more than a few outfits – but otherwise you stayed in the clothes that you were sewn in to. Buttons and zippers came later.

At night you might have taken off the top layer and put on a nightgown, if you were rich.  Otherwise you just slept in what you had on.


So this was the time of year that young men’s fancies turned to thoughts of marrying.  A wife was someone who would work hard in your home, and if you married in June, this meant a whole year’s work out of her before you needed to spend any money on new clothes.

Smell?  When you all smelt the same, this wan’t much of a problem.  Food spilt down your front?  Well, you just gave your ruff a quarter turn and a clean side was displayed – you only bothered to put on a clean one when it was dirty all round.

Even the rich didn’t bathe too often, but Queen Elizabeth Ist was considered eztraordinary:  one diarist wrote, “Her Majesty doth hath a bath once a month, whether she need it or no”.

Her successor, James Ist, came from sturdy Scottish stock, who used their hands for everything.  James liked nothing better than to go hunting;  when he caught a stag he would disembowel it, putting his hands in to cut out the innards and give them to his favourite hounds.  Blood on his hands was wiped away on his clothes, and off he went again.

It was Beau Brummel who made us wash – in the mid-1700s.  He decreed that no Gentleman would come into a ladies’ drawing room “smelling of the stables”, and gradually we started to use soap and water.

All this is to remind you that we are lucky;  today having a bath or shower is a lovely experience.  Often it is the only time when we have to ourselves;  our ancestors would have shared it with the whole family, and servants climbed in to the tub when they had finished.  I did wonder what they would have thought of  Heaven Scent Shower Gel – and would they have understood how to use a shower?

Sarah Jones London has created a detox product that’s as easy as taking a long hot shower, containing  essential oils, and exfoliating properties that are ace at ridding our skin of the nasty bits of rough skin that we often get.  Queen Elizabeth I would have loved this, as it smells of citrus aromas of lemon and grapefruit, coupled with natural jojoba beads.  With thirteen different essential oils, ‘Heaven Scent’ provides a combination of  benefits with the fruits and spices that were around in the first Elizabeth’s time.

Among these essential oils is the infusion of Cinnamon, which helps to relieve aching muscles and give your system a wake-up call, tangy Grapefruit helps reduce the appearance of cellulite, the blend of Lemongrass essence hydrates, brightens and uplifts your skin and Litsea oil helps to calm you down. You could say this provides a detox for the skin, but I just prefer to say it wakes me up and leaves my skin feeling soft and stripped of all the nasty rough bits.  James Ist didn’t know what he was missing!

Do Doctors dismiss adverse reactions to Drugs?

When patients complain of adverse reactions, studies show doctors  likely to dismiss them

If this sounds familiar, you are not alone, according to Professor Donald Light.

In his latest speech, he says when patients complained of adverse reactions, studies showed doctors were likely to discount or dismiss them.

He was presenting his paper, entitled Pharmaceuticals:  A Two-Tier Market for Producing ‘Lemons’ and Serious Harm, at the American Sociological Association’s annual meeting in Atlanta, Georgia.

So is he some crank?  Er – no.  He is professor of comparative health policy at the University of Medicine and Dentistry in New Jersey;  Leverhulme Trust visiting professor at the University of Liverpool;  writes in the BMJ, Lancet etc. and advises the UK Government. So his words aren’t hot air.

His latest speech in the US talking about drug companies spending “two to three times more on marketing than on research to persuade doctors to prescribe these new drugs”, is currently quoted on the Telegraph’s front page, in the Scotsman, etc.

Of course, Dr Richard Barker, director general of the Association of the British Pharmaceutical Industry, representing more than 70 UK drug companies, leaps to their defence.   “This is a theory of information asymmetry based on what I would call the blindingly obvious, that doctors and regulators know more about medicines than the average patient”.

But – but – when I look back on my treatment, it is frightening how little some doctors knew about drugs and their side effects.

One of the drugs I was on caused carpal tunnel syndrome;  months of problems when I was told to stop work because the doctors said I had RSI.  Until a chance piece of research sent to me from an American hospital said this drug had been found to cause carpal tunnel syndrome.  So I phoned the manufacturers – who sheepishly mentioned that this had been left off the accompanying leaflet.  I made them put it on.  No offer from them to compensate me for lost earnings, but at least I stopped blaming the lap top.

Then a professor of Dermatology told me that massive skin lesions that appeared overnight all over my body, were “due to your age”.  Etc. etc.  Isn’t it time the NHS took its head out of the sand?  Their ostrich attitudes cause us untold grief, and according to Light could be doing us a lot of harm.

When I had more problems from drugs, a concerned medic said “is there anything I can do?”  But when I suggested that he could talk to the drug company and get them to be more honest about side effects, he literally went white.

However, as Baker says, “Patients can, if they want, go and find the information out”.  Yes, thank heavens for the internet, when we learn that we are not alone, even if doctors dismiss our horrible side effects with “I have never seen this before”.

There might be light at the end of the tunnel.  Last year Sanofi, a major pharma company, asked me to talk to their staff at their AGM about side effects.  I stressed that because of side effects over 60% of us come off drugs, which eventually would hit their profits.  And asked that Pharma got together with patients to help us stay on the drugs.

Afterwards I was contacted by Sanofi and told that my session had had an 85% excellent rating – by far the highest.

So why not listen to patients, and when drugs are developed, train doctors what to expect, and how to deal with side effects?  The French have already started to address this  – isn’t it time we followed?

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