Monthly Archives: November 2010

If you need a specialist doctor to get back to work

Procession of Match Workers to Westminster, Ju...
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Occupational Physicians

Recently, Europa Donna’s (European cancer charity) Newsletter had an interesting item about Returning to Work.

Tomas Rejda from Amsterdam Medical Centre reported that in The Netherlands all patients have to have access to an Occupational Physician.  He suggests that one should be included in all Multidisciplinary Teams (MDT).

According to Rejda, “fatigue is the strongest negative predictor of returning to work, although patients who feel strong often do return to work.

This is important in determining which patients require extra guidance – but must seem like Utopia for so many patients in the UK.

Apparently evidence-based guidelines for work recovery have been published in the Netherlands, and Rejda is calling for the creation of international guidelines on the subject.

What is an OP?

An Occupational Physician (OP) is a doctor, with specialist training and qualifications, who in relation to any particular workplace takes full clinical responsibility for advising management and the workforce on all health matters connected, directly or indirectly, with their employment. This may have a bearing on health as it affects work or on the effect of work on health, including that of the public at large, either in general or as individuals.

Occupational health services are frequently provided by doctors working on a part-time basis. Even if they have no formal training or qualifications in Occupational Medicine, they should ensure they have the competence to perform the duties likely to be required of them. “Specialist” is a term having a legal meaning in European law, and should not be used to refer to those lacking appropriate qualifications.

So how can we take advantage of this?

If you think an OP might be able to help you return to work, or help with work-related issues, ask you Oncologist to refer you.  If they don’t know one, the following contacts might be useful:

Society of Occupational Medicine  Hamilton House, Mabledon Place, London WC1H 9BB 020 7554 8627

Institute of Occupational Medicine, Edinburgh

Australian Faculty of Occupational and Environmental Medicine

And you could ask your MP to obtain copies of the guidelines published in The Netherlands.

The BMA (British Medical Association) has published a booklet on work of an OP – but you can’t get hold of it – you are ‘only’ a patient, and it is restricted to doctors!

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Snow and ice is bad for your skin

Snow scene at Shipka Pass
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Watch out for dry skin in this weather

~It may look pretty, but snow can wreak havoc, especially if you have dry skin as a side effect of drugs.  Add to this icy winds that will further dry out skin, and this makes winter weather a recipe for disaster.

Now is the time to really pile on the best skincare you have in the cupboard, and if you want to have glowing skin for parties, you need to get to work – seriously – with creams and balms.

In olden days you would be smothered in goose fat at the beginning of winter, sewn in to your winter clothes, and that was you snug and protected (the fact that you would also have colonies of bugs and fleas crawling around didn’t really worry you – you were used to it). You happily went without a bath;  when everyone else was in the same boat you didn’t notice the smell, but if you were extra fastidious you wore heavy perfume or carried a nosegay in which you buried your nose – Judges still do that today for special holidays.

Queen Elizabeth I was considered extraordinary;  one chronicler wrote, “Her Majesty doth take a bath once a month, whether she need it or no”, but her successor, James I, was made of sterner stuff.  He didn’t worry too much about washing his hands, so that even his courtiers were heard to complain.

Today we are very prissy, and insist on a bath or shower every day, but this would have shocked our ancestors, who would have been convinced that we were heading for pneumonia at least.

Anyway, I am like my daily bath to warm me up – so there!

However warmly you wrap up, if you haven’t ‘creamed’ your body skin underneath the layers, icy winds will manage to penetrate and produce rough skin.  And after, I always make sure I use a skin balm, lip balm, foot balm and specially rich creams to protect my skin as much as possible.

Products for Skin Defence

Bath Don’t use soap – most are too drying.  Instead, use a good quality gel or bath foamer. I love the products made by the French company, L’Occitane;  based in Provence.  Buying their products from their boutiques is always fun, and  shop staff have a lovely line in amusing and friendly chat;  they really take an interest in customers.  This week, I decided on their Cherry Blossom Shower Gel (which foams up in the bath too), and the 1/4 litre bottle seems to last – and last.   £12.50,p24GD250CB.htm

After bathing Always use a good skin balm;  currently I am using Lipikar Baume AP. Made by La Roche Posay, this is actually for people with eczema, but I have been using it for my skin during the current icy weather, and it works a treat. I often get nasty patches of flaky skin, but so far it is a smooth as can be.

Then I slap on the Flexitol Heel Balm all over my feet.  Don’t forget you can get this on prescription – so ask the doctor for this.

Once a week (more often if you get chapped) use a good body scrub all over.  I have been using proto-col instant body bliss, which lives up to its name.   You may think that you only use this type of product in the summer, but it is essential to use in winter too, as winds chap you skin – even through thick woolly layers.  Before I get into the bath or shower, I rub this all over, taking care over arms, back (this gets lots of wind chapping it), elbows, feet and legs.  proto-col has passionflower oil in it, so be very, very careful when you step into the bath,  as you will be slippery!  Then it is wonderful if you lie back in the bath and let it soak in.  (and don’t forget bath will be slippery when you get out).  £19.95

Face – you need your best cleanser, toner, protection and serum – whichever works best for you.  I have been tryng out hero products, so click on the Face and Skin category on the list on the right, or see

Lips – again, Flexitol make a very good Lip Balm.

Hands – keep hand cream by the side of the washbasin, by your bed, in your handbag, etc. and keep on and on using it.  Flexitol also make a very good Hand Balm – and I am hoping that one day NICE will approve this to be issued on prescription – well, I can dream!

Then go out and enjoy the winter!  Just don’t forget if the temperature is low, even when the sun comes out you can still suffer ‘winter burn’.

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Osteoporosis can be reversible, if NHS gets its act together

NHS has the equipment to deal

with this – but have they the will?

~”You have improved”, said Mary, my nice Physio at my local hospital, when I had my last physio session.    Which was cheering.

I had just returned from a superb Italian treatment centre, where they had said they were used to helping those of us with osteoporosis.

And, unlike most medical centres, the Villa Eden was filled with people of all ages, such as  footballers from AC Milan and Inter-Milan clubs, sent there because treatment is Ace.

The experience had been so cosseting and luxurious, I just enjoyed myself and hadn’t thought of any extra bonuses that might appear!  But there is no doubt that in Europe, weekly exercise is seen as the way to help prevent problems caused by osteoporosis such as expensive fractures.

Why I went to Italy

Depressed it was taking so much time and energy to get information and treatment in London for my osteoporosis, I was ready to give up.   Put on one of the cancer drugs that possibly has osteoporosis as a side effect, iit was devastating to be told I had developed it.

So it was back on the Internet to find out what to do.  First, I found out that exercise was advised.

I was lucky enough to have an insurance company that paid for weekly exercise classes, and at the end of a year my annual DEXA scan showed I had gone in to reversal – I was beating osteoporosis!

Looking at my scan, my Professor said he was delighted, and my bone density had increased by 21%.  I was now osteopeanic.  He told me to continue with what I was doing, but easier said than done in today’s NHS culture of dumming down.

After a year the insurance company said they had paid out enough – so I went to ‘my’ cancer hospital, who referred me to another hospital.  The outcome was yes, they knew that exercise could help, but the NHS can’t provide that.

“Even though it may save me from have a fracture, which costs around £12,000+ to treat?”

No – they weren’t prepared to help. But would be happy to repair fractures.  You couldn’t make it up.

So it was back to Europe, and find out what I could there – and copy this when I got home.   I needed to know more:  which were most effective exercises, how should I do them, etc.  and needed  a ‘kick start’ with professional advice to cheer me up and really get me going.

Trying the Italian Way

Friends recommended Villa Eden, in the middle of the Trentino mountains in Northern Italy. Its director, Dr. Claudio Taverna, is also a specialist in sports medicine, which augured well.

I used to visit Italy frequently, many years ago, when their health system was ‘Third World’.  But boy!  has it improved, and I was staggered when I analysed what is done to help at Villa Eden, to see how simple their solutions are – and how, if only Andrew Lansley had the will, we could copy their treatment ideas in Britain – particularly in dealing with Osteoporosis.

Where is Villa Eden?

The Villa is in the Northern Italian mountain resort of Merano, which sits at the entrance to the Brenner Pass.  It was a favourite resort of the beautiful Austrian Empress Sisi of Austria;  now, she  really was obsessed with her health – so if it was good enough for her – it should suit me.

Arriving at the Villa I walked inside what seemed like a charming, welcoming large home.  Staff smiled, guests smiled, the wood panelling didn’t look a bit like a health spa, and my bedroom was palatial.  I was going to enjoy the holiday – and forget about osteoporosis.

Dr. Taverna’s English put my languages to shame, as he swiftly took a health history from me.  No lectures, no heavy programmes – it was, “I will introduce you to ……” and a little card with my programme was given to me.  All I had to do each day was to turn up in various venues at the time I was told to, and enjoy talking to the other guests.  I was given a computer test (Italians love the IT age), but stopped laughing at this when Dr. Taverna said the Milan football clubs sent their top players here if they didn’t recover quickly enough;  the computer could often point to what was wrong.


First surprise was the Aquagym.  I had been told that swimming, although good exercise, wasn’t the best for osteoporosis. But whoever told me that hadn’t taken part in a Villa Eden Aquagym!

The instructor was in the water, encouraging us to jump up and down – vigorously – then leapt up onto the side and demonstrated all the various moves we had to copy.  Without even thinking about it, we were definitely doing load-bearing exercise, but having fun  in the water, which meant we worked hard but didn’t notice the effort.

Any hospital with a hydro pool could easily copy this.

Now I am home, I have been copying the moves we were taught – and hopefully my Physio will continue to be impressed.


I knew exercising on the Treadmill was highly recommended, but was surprised to be told that it didn’t matter how fast I walked on it – what mattered was to set it to incline, so I was doing a gentle climb.  When I came back to London I asked Mary about this – and she said that was right. So now I need to find a supervised programme near me, where I can be watched as I walk and walk – to make sure I don’t slip.

My programme had another surprise – usually one gets one specialist massage, and that’s it.  But instead of only one, I had been told I would have one every morning.  Dr. Taverna had seen I had a history of lymphoedema, and dry skin, and Pamela was given the task of zapping this;  that ten days later I am still feeling lovely after-effects.

Walking outdoors

Irmi is one of the villa’s treasures – she takes guests out every day on walks into the surrounding villages, as walking is one of the best ways of exercise for osteoporosis.  She takes guests off the beaten track to  see life as it is really lived in the farming communities, and the mountain towns that lived on trade going through the Brenner pass.  But this isn’t hard walking – Irmi drives the hotel’s mini-bus up to a pretty village, then you get out and walk, and wander.  A lovely way of doing exercise, if you are like me and think cars were invented so I didn’t have to walk.

Mind you, if you want, you can go off up the mountains on your own, and walk for miles.

Dancing and Trampolining

are also good for exercise, and you would see some of us bouncing around and doing a mean quickstep whenever there was a burst of music!


Dr. Taverna took me through what I eat each day, and  said I should include more alkaline foods in my diet.  So went on National Osteoporosis  website, and there was a question on the forum asking what were alkaline foods – and the answer.

Also  it is important to include a visit to the Dietician to ensure you are getting your calcium and the right vitamins.

Programme Benefits

This programme was a lovely relaxed way of doing exercise, focussing on Aquagym exercises which I can now do in my local health club’s pool;  explaining the benefits of the treadmill, and most effective way to use it – again when I went to my local hospital’s exercise classes there was talk about not using it – Elf n Safety etc.  But I insisted that that was what I had been told to do.  Fun walking, and a look at what I ate, and no wonder Mary was pleased with progress.

I also had the benefit of the very knowledgeable staff who did computer tests, talked about my fears, and gave lots of sensible advice, but in a friendly way so it was easier to remember. The English-speaking staff go out of their way to help and demonstrate the best exercises, and you come away with ground rules ‘set’ in your mind, so it is easy to copy the programme at home.

This was genuinely a marvellous ‘kick start’ to what I needed to know to do the right exercise – all I have to do now is to get my local hospital to help with providing classes where I can use the treadmill and the trampoline.  Easier said than done – they want me to use a local gym, but beware – once you have been assessed that’s it. You do NOT get supervision – and when you are potentially fragile and more unsteady on your feet with osteoporosis, this is asking for trouble,

For anyone who wants to follow my ‘holiday’, I flew to Verona and then you can  either hire a car, or the hotel can arrange a taxi.


For a four night, five day programme, with one treatment per day, cost is from €880 (approx £750) per person for full board.

Back in UK – most hospitals have weekly classes of general exercise for heart and other patients.

  • It is very simple to include those with Osteoporosis
  • The equipment will already be there
  • Supervision will be in place
  • As classes are already in place, there will be NO extra cost to NHS or patients

But the NHS seems totally incapable of keeping up with the times – when are hospitals going to listen to Cameron and Lansley and copy what Europeans get?

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NHS postcode lottery is STILL with us

The Patients’ Association highlights this evil hasn’t been banished

saying the Department of Health has published a report on the variation

in care across the UK, called The “Atlas of Variation”.

This report is such a disappointment, after all the promises, one wonders what the Coalition were about banging drums and complaining about the NHS.  They don’t seem to have done anything concrete, yet;  we still have same ‘old’ NHS.

The PA say report “compares Primary Care Trusts’ (PCT) and Strategic Health Authorities’ (SHA) performance in a variety of areas from cancer to diabetes, and goes on to say the report reveals the shocking postcode lottery that still exists across the UK with Trusts failing to provide consistent care”.

Health Minister Earl Howe said, “Our vision is for a patient-centred NHS that achieves health outcomes that are amongst the best in the world. Making this information available to commissioners and patients will help them to identify and address unwarranted variation to better meet the needs of their local populations. Doctors know what treatment is best for their patients and that is why we are getting rid of top-down management and putting them in the driving seat.

Er – not in our neck-of-the-woods, your Lordship.  The local LINk (Local Initiative Network ) met this week, and committee members pointed out the cuts in lower management i.e. nurses, clinical nurse specialists, physios, that are being planned in our area in cancer, diabetes, heart, mental health and other services.  But so far we haven’t heard a peep out of management to say their jobs are on the line.

“Our historic commitment to protect health spending means that funding for the NHS will increase in real terms every year, so that we can continue to provide the best value from our protected health budget and make every penny count.”  Does he live in same world, one wonders?

The real picture

Commenting on the release of the report, Chief Executive of the Patients Association, Katherine Murphy said, “We welcome this report into variations in healthcare across the UK and it reveals some of the stark differences in the quality of care people receive. Patients should be able to access high quality healthcare no matter where they live. It is only by identifying those areas that need improvement that we can eliminate the postcode lottery.

“While the report is intended to be for commissioners, patients deserve the chance to see whether the PCT is performing well or not. This report lets patients see which of five performance bands their PCT sits in using the map but it is not possible to identify where individual PCTs sit within that band. It is not possible to effectively compare individual PCTs.

“Patients need to have access to meaningful information on their healthcare in order to allow them to call for change where it is needed.”

The performance bands put PCTs in one of five groups ranked from high to low against a series of measures.

To see the full report, please visit

Londoners have a chance to voice their opinion

by signing up to the Patients Association Focus Group in London – Choice and Rights in the NHS – no doubt other areas will follow, just ask.

The focus group will take place on Friday 10th December in central London from 12.00 – 15.00 pm and will include lunch. The PA are looking for participants from London to attend, so if you think you would be interested, please contact Rachit Buch on or 0208 423 9111 and we will provide more details.

And I could be for the high jump – I have used the Dept Health logo at the top of the page, out of devilment.  I shouldn’t do this without asking permission, but after 4 pm on a Friday, who is there in Whitehall to ask?

So if I get marched off to the Tower – throw me some buns (preferably chocolate).

Cancer patient wins rare apology from USA's Transportation Security Administration

ARLINGTON, VA - DECEMBER 30:  Transportation S...
Image by Getty Images via @daylife

Climbdown by TSA

Today, Reuters news agency announced that America’s TSA (Transportation Security Administration) has apologized to a bladder cancer survivor, after passenger Thomas Sawyer’s urostomy bag opened during an airport security patdown, covering him with urine.

On Monday, the head of the TSA, John Pistole, called Sawyer, a retired school teacher from Holt, Michigan, to discuss the November 7 incident and apologise;  quite a rare occurence!

On his way to Orlando, Florida, a security screening machine at Detroit Metro Airport noticed the bag that collects his urine. Sawyer’s bladder was removed as part of his cancer treatment.

A TSA agent began patting him down, ignoring Sawyer’s warnings that his urostomy bag could open if handled roughly. The seal of the bag came undone, and urine spilled over his shirt and trousers, he said.

The TSA apology comes amid growing complaints about enhanced airport security, with passengers complaining about the physical patdowns and the new full-body screening machines in airports.

Female breast cancer survivors have also complained about being asked to remove prosthesises, so if you are headed to the States, best thing to do is quietly stand to one side, explain that you have X which might cause scanning problems, then hope that the officials will be alert to your needs.  I have been following the news, and reactions have certainly given the TSA pause for thought.

See more on

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Symptoms – what you might look for if worried

If you are worried – check the following

In the manuals, when doctors write about gold standard treatment, a kindly Specialist Nurse will take us aside before we finish treatment, gives us a reassuring talk, but explains that cancer might return and what we should look for.  He/she is also supposed to give you a telephone number where you can call for as long as you want.

Now, I hear of wonderful nurses who carry this out to the letter – but did happen to you?  No, me neither.   If it did happen, then send that nurse another bunch of flowers.

November is Pancreatic cancer month, so if the publicity gets you worried, these are symptoms Cancer Research says to look out for.  If you are of a worrying disposition, I can only apologise – but know that I would really have welcomed a reassuring talk, and then would have probably put it out of my mind, until if something untoward happened.

There is screening we should undertake regularly  – but again how many were told about this?  Me neither.  But here is a timely guideline published by NHS which might remind you

Time and time again doctors say we know our own bodies best.  If you have any of the following symptoms, and you are worried – then just phone up your Oncologist or specilist nurse.

Pain in the stomach area

About 7 out of 10 people with pancreatic cancer first go to their doctors because they have pain. Pain is more common in cancers of the body and tail of the pancreas. People describe it as a dull pain that feels as if it is boring into you. It can begin in the stomach area and spread around to the back. The pain is worse when you lie down and is better if you sit forward. It can be worse after meals. Your abdomen may also be generally tender or painful if your liver, pancreas or gall bladder are inflamed or enlarged.


More than half of patients have jaundice when they first go to their doctors. Jaundice is yellowing of the skin and whites of the eyes. The urine is darker than normal and bowel motions may be lighter in colour. Jaundice is more common with cancer of the head of the pancreas because the tumour blocks the bile duct. This tube carries bile into the duodenum. If it is blocked the bile ends up in your bloodstream instead. Bile contains a lot of yellow pigments so it turns the skin yellow. Jaundice is a common symptom of many liver and gall bladder diseases. It is often easier to spot in the whites of the eyes rather than the skin.

More early symptoms

Other early symptoms might include loss of appetite and back pain.

Other symptoms of pancreatic cancer

Latest News on Jobs Front;

Cancer Research UK
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Weekly news on jobs front

Before I landed into the cancer field, I had been CEO of Europe’s biggest agency for part-time tourism staff.   So it seemed sensible to volunteer when asked by a cancer charity to sit on a committee discussing  ‘Survivorship‘, and in particular ‘Vocational Rehabilitation‘  (where do they get this nerd-speak which means jobs or work?).

I know major concerns for Survivors is how to get back into work if you are too tired to work full time;  what to do if your ‘cast-iron’ job guarantee is with a company that is taken over – and all promises fly out the window, etc?  So thought my experience might be useful.  Cancer hasn’t destroyed our brain cells, so what’s to stop us working from home on our lap tops?

At the first meeting, I found most people around the table didn’t have practical experience of what the jobs scene involves.  Then discovered that all but one of the other 17 on committee were either full-time employees of charity or NHS  ‘Consultants’.   No-one from RADAR, Unions, ACAS, IPD, HR, etc. whom I was used to working with on similar exercises started by Dept. Employment (whatever it calls itself this month).

It soon became obvious why they had spent the month before first meeting boring me with endless, pointless phone calls and visits.  At the first meeting they started to propose things which were against the law, and I realised that phone calls/emails/visit weren’t to help me understand what was required;  they were picking my brains.

So I asked for same fees as Consultants.  Was told “we don’t pay volunteers”.   So asked why people like myself weren’t put forward to NHS to be their paid Consultants? No reply.  In fact when I tried to find out how people in a similar position, with lots of skills to offer, could get on the NHS Consultant list, the whole of Whitehall clammed up.

By this time I must have been really unpopular!  So suggested that the website (it isn’t going live until 2012!)  could do with the many IT people amongst cancer survivors to make it more relevant and interesting – there was shock, horror at the suggestion.  NCSI said website was only meant to go to Doctors – no wonder many have no idea of the realities of cancer. Comments re website at Macmillan worshop at their conference made me realise I most certainly was not only one who wasn’t overwhelmed by

I resigned, but someone has to do something NOW – we can’t bumble along for another two years – we need work.   So I set up the Survivorship category on this website, with a Jobs  list.  And I am out looking for potential leads that might be helpful – if you know any please contact me at

Jobs may offer low wages to start (although some are well paid) BUT

I have picked them out because

  • they could be a way of regaining confidence that you CAN work, and try out how difficult it is going to be
  • they will help on your CV – potential employers don’t like employment gaps
  • some of them will lead onward and upward to better jobs
  • Warning I do not have funds to apply for an Employment Licence, so check out jobs info and companies listed.


  1. Cancer Research UK pay for some ‘volunteer’ jobs, and currently have  vacancies for part-time Events staff at £7 per hour, up to yearly contracts around £30 – £40,000 p.a.  Events are fun, and having been involved in that type of work, you get practical skills in dealing with people, organising,  liaising with police and authorities, catering etc.  Have a look on
  2. 35,000 Census 2011 Jobs to be filled for one to ten months.  Some supervisory positions available also.   Jobs are on offer as the Government gears up for the 10-yearly census. (N.B.  This is beng run by Capita, the same Capita that manages to cause chaos with contracts in some hospitals, etc – so be prepared for I don’t know  what).  Census collectors and special enumerators will work in the community encouraging people to fill in the questionnaires, with census co-ordinators managing this process. In addition, census coverage survey staff will carry out doorstep interviews.  For more information visit or call 0845 604 4013.
  3. Welfare to Work
    This is a new scheme the Government has announced, to get those claiming benefit doing unpaid jobs.
    Theoretically it will mean sweeping the streets, etc. won’t it?   Er – no.  By the time they have appointed
    all the new administrators, the Street sweepers union or whatever has gone on strike, and
    disabled have protested – the scheme will fade into nothing.
    So why am I lauding this? Because it will create paid jobs for those who jump in quick.   As a start get in touch with your MP and offer your services.  Say you have had experience in IT, logistics, finance,administration, etc.  You are ideal to help set up this scheme as you are claiming benefit/disabled/know what disabled want/live in constituency.  So can he/she contact Ministry and find out where you go to get a job IN ADMINISTRATION.  You need to stress your previous salary, and that you are looking for a top job that will bring you back into the high tax-paying stream- not a volunteering one!
  4. Vodaphone’s innovative scheme for two month’s paid work closes applications 23rd November – see

Equality Act 2010 is now in force.  This extends protection for people affected by cancer from experiencing workplace discrimination. It replaces the Disability Discrimination Act (DDA) and applies to all employees in England, Scotland and Wales.  So if you are currently trying to get back your old job, have a look at this.   See Noelle’s interesting comments below.

Consultancy for NHS.  Having been involved in working for Ministries, I know that ‘Consultant’ jobs are thrown around with abandon.  I got on the merry-go-round, and used to be invited to sit on numerous paid committees.  If I queried why – as I didn’t queried why, and was told,  “because you know how to write reports”.  Uggh!   NHS clammed up when I suggested that cancer survivors would be ideal to develop the National Cancer Survivorship Initiative, and that their website could do with some serious work – at recent Macmillan conference there wasn’t one person in break-out room who had a good word to say for it.  So if anyone has any leads into whoever allocates consultancy jobs, I would welcome them for this site.

Any job leads – send them in to

And keep on looking at site – as potential job opportunities arrive in, I will post them.  Next week I am researching jobs in tourism – and NOT those appalling ‘volunteer’ jobs the Olympics are offering.  Every Olympics I worked at managed to pay staff a decent wage – except us.  UK plc is relying too much on ‘volunteers’ and work experience – and in the long run if you don’t earn money you can’t contribute to the economy.

This  is one of  many stories on Google which highlights the importance that potential employers can attach to evidence of recent employment  …

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NICE – good news!

Whitehall, London, looking south towards the H...
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Government proposes changes to system of medicine pricing in the NHS

The Government is moving to ‘a system of value-based pricing’.

Basically, this probably means they won’t acknowledge that NICE is a ‘waste of space’, as said by an MP – but saving face, they are doing ‘as set out in the NHS White Paper, ‘Equity and excellence: Liberating the NHS’.

Crystal English was never the forte of any Whitehall mandarin, but they say ‘the Government proposes to reform the way that drug companies are paid for NHS medicines, moving to a system of value-based pricing when the current scheme expires (2014) and a new role for NICE.

The Patients’ Association says it is hoped that this will help ensure better access for patients to effective drugs, technologies and innovative treatments on the NHS and secure value for money for NHS spending on treatments. As part of this plan, it is proposed that by 2014, NICE will lose its power to turn down new treatments for use on the NHS and instead will give advice on which drugs and technologies are effective.

The decision on whether patients should be given treatments will be determined by GP consortium (sic) who will decide whether a treatment should be funded or not. Ministers hope that with value-based pricing, they will be able to make new treatments affordable to the NHS by negotiating with pharmaceutical companies on price

In response to the move, The Patients Association made the following statement, “We welcome the proposed move to a system which will make effective treatments more affordable to the NHS and ensures licensed and effective drugs are available to patients. It is important that patients are able to access clinically effective drugs that their doctors believe will most benefit them, help to improve their quality of life and may extend their lives.”

Dr Richard Barker, director general of the Association of the British Pharmaceutical Industry, also welcomed the move, saying, “It should be a clinical decision on what medicine a patient needs, informed by a broader sense of value than the current one that NICE applies,” he said.

Significant concerns must be addressed before the plans are implemented. The process that GP consortia use to determine whether they will fund a drug must be open, transparent and fair. They also must ensure that some consistency is achieved so that the availability of drugs, does not vary by location.

So keep on trawling the Internet – keep on asking doctors for information about new drugs, and print out data supplied by the US medical research centres.   Your GP can’t be an expert on all drugs, but if given copies of research from reputable agencies, they can follow this up on your behalf.

And if you find the drug your doctor recommends has been approved by a European agency – then I somehow suspect that you will find you won’t need to fight the battles of the previous decade ; let’s hope so.

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When you are unsteady on your feet

Representation of a Polio victim, Egypt 18th D...
We’ve had problems since then  Wikipedia

Hitting lamp posts isn’t funny

Patients with core stability and balance issues can have problems keeping their balance, especially if  they have had  muscular and other problems affecting mobility and balance.  As one sufferer comments, “I have formed an intimate relationship with the local lamp posts – they have saved me from many a fall”.

It’s even worse if you are unable to work because of moblity problems.  Those who can’t work can have a humiliating and tiring journey trying to get assesed for entitlement to benefits.  Long delays to see over-worked doctors;  these doctors often don’t have time to do more than a cursory test, so the patient may be able to ‘steal’ themselves to complete one test.

If there were time for repetitions (which there should be) the doctors would see that climbing stairs rather than three steps in a corner, walking for more than a few feet, and carrying out other tasks for more than a few seconds is impossible.  But there is never enough time, so patients can be denied benefits to which they are entitled.

Patient after patient has spoken of the almost-cruel indifference with which they are treated when they have mobility problems.  There can be long delays trying to get benefits, and if the assessor doesn’t understand your condition, you end up being told you don’t qualify. If you are trying to get medical help if your chronic condition worsens,  today’s NHS patient services are being cut and cut.

Conditions such as heart problems cancer, etc.  can leave behind poor mobility, but patients are made to feel it is part of the process, as they try to find ways to relieve joint pain and loss of momentum.

One polio survivor showed me a large X-ray of her spine outlining a well-defined S-bend of scoliosis, and said she had gone to the Lane Fox unit at St. Thomas’ Hospital to see if she could get onto their physio programme.  After a cursory examination, a doctor told her, “your spine is perfectly straight”. And denied her the treatment she desperately needed.

However, she was lucky – she ended up being looked after by Prof. Roberto Guiloff of Charing Cross Hospital.  When she told him what the Lane Fox doctor had said, he was so surprised he dropped her spinal X-ray.  He sent her to Esther Palmer (recently elected Physio of the Year by the Polio Fellowship), and the specially targeted exercises Esther gave her have reduced excruciating spinal pain to almost nothing.

She was lucky, but it is worrying that so many patients in Britain have problems being assessed, so that they can get the appropriate treatment and benefits.


But sometimes things are meant to happen, and when I went to Petriolo medical spa resort near Sienna, chatting to the Director, Dr. Brocchi, I mentioned I wrote articles about polio.

Immediately his eyes lit up.  “Have you tried our Pedana Stabilometrica machine?”  When I said no, Elizabetta Urgelli was summonded to take me through its paces.  Not only did I have great fun as I tried to work out what the machine was doing – but I could see immediately how it could help patients who have difficulty proving to assessors that they have mobility and balance problems.

It could also cut down on doctors’ time when assessing patients, and even help point out where problems might lie.

Elizabetta said they could use the computerized postural platform (see picture) for more efficient “treatment and prevention”.

“It’s fundamental for everybody and above all for sportsmen to have good neuromuscular stabilization, because our nervous system elaborates a series of muscular contractions which must be balanced by other muscles which work in decontraction”.  It had started out as an idea from a dentist, who was worried how lack of balance can affect our bite and our jaw.

So what is a posturometric examination, and what does this involve?

It’s an exam which is done with a posturometric and stabilometric platform (see picture) to find out if we distribute our body weight correctly, and to value the eventual presence of foot, articulation and occlusion problems.

On the platform, I was told to stand on two foot plates.  Elizabetta fiddled with the computer – then I had to stand with my eyes shut – and then stand with my mouth open. All time the machine was producing computerised print-outs.

When these print-outs were shown to me, I was astonished to see that although the measurements were almost the same each time, each one showed that my left leg was bearing 40 kilos – my right leg only 24 kilos.  No wonder I find it difficult to walk straight.

Then, if you look carefully at the picture (above), you can see plumb lines that are there to measure how straight is your spine.

These are used for what Petriolo Spa say  is “a postural check up.  This is given in order to prevent future damage and to recuperate functions through better compensation”.

Diagnostic indications

I wished I had had medical training;  the machine was churning up hundreds of questions in my mind, but I could not find the correct words to use, and probably I would not have understood the answers.  So I bought information back to England, and phoned the British Polio Fellowship – who were very, very interested.  Then spoke to Prof. Guiloff who asked for more information, and finally spoke to Hilary Boone,  of the Polio Survivors’ Network. She has numerous studies of the massive difficulties faced by those who had polio, and find it incredibly difficult to obtain benefits, as they are assessed by people who don’t understand how the disease worked.

So what do the Italians  say the machine can measure?

  • prevention and early diagnosis of disorders and of postural pathologies and of balance disturbances
  • control of induced variation (due to clinical tutors, plantar support, therapies)
  • analysis of correlations (occlusal, etc.)

Therapeutic indications

  • postural re-education
  • correction of position errors
  • re-education of balance disturbances
  • occlusal re-education

As you probably realise, I am quoting from the Italian – but if you are medically minded I am sure you will understand what things mean – especially as Latin is basis for much medical language, and of course Italian.

What’s in it for the British?

I could immediately see that having a computer print-out in one’s hand would be able to show doctors exactly what is the extent of a patient’s problems.  A cursory examination might reveal that a patient makes great efforts to walk as straight as possible, and not much can be assessed by them walking two or three yards, unless the person understand their condition.  But have the weight that each leg is bearing confirmed in black and white – Simples!

  • A disability assessor for the Benefits Office wouldn’t be able to argue with a computer print-out giving factual evidence of a disability
  • Or an athlete might have problems getting back to peak performance, but has difficulty in finding out what is causing this
  • Or someone with neurological problems finds that cursory ‘clinic’ appointments with a junior doctor don’t produce any helpful treatment

But show a doctor, or disability assessor a computer print-out giving the extent that you are unbalanced, and how many kilos each leg supports, and they can’t possibly argue with that.

There are so many possibilities, but at a cost of £40,000 for each machine, I can’t see many NHS hospitals installing this.  I did ask Technogym if there was a machine in Britain  – but apparently not yet.  However, In January the EU is yet again going to discuss cross-border medical treatment, and it might be possible to get the NHS to fund a visit for investigation.  See

What next?

Remember, I am not medically trained.  I found that the machine seemed to offer incredible possibilities, but to a professional the information might not be any use.  My advice would be to contact Dr.Brocci at Petriolo Medical Spa first, then take it from there.

Two things in its favour:

1.  This is an approved Medical Health Spa, licenced by the Italian Ministry of Health.  These medical spas offer incredible treatments,  often far in advance of what we have in Britain, and have to keep to strict guidelines.

2.  This spa has wonderful resort facilities, sits in the middle of a vast but tranquil forested area, and offers a lovely holiday with very, very good cooking!

Barbara provided excellent interpreting when I met Dr.Brocci, but Elizabetta and most of the staff speak excellent English.

Click on link below to find out more about the spa and its facilities

Contact Barbara Scorza for more information about the resort or its medical facilities

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Good News/Bad News on NHS budget

Royal College of Nursing HQ, Cavendish Square....
Image via Wikipedia

The Good News is NHS budget in England to rise by £10bn this parliament  – bad news is that in reality front-line staff are already being cut

If you are like me, and need fingers to do complicated maths, my intelligent friends say this money is equal to a “rise of 0.1% above inflation each year”.

Even I can understand this is NOT good news, the way prices are rising.

While ministers say all savings from the efficiency drive will be reinvested into the NHS, unions are concerned about job losses.  The Royal College of Nursing (see photo) estimates more than 10,000 posts have closed in recent months and said if this trend continues patient care will be hit.

So Cameron and his team will really need to put their money where their mouth is, and go through NHS budgets with a fine tooth comb to see where savings can be made.

And in the meantime, whilst these complicated maths are going on, we are getting older, we are living longer (or does it just seem this way), and therefore have more things that can go wrong.  The way doctors give us drugs to compensate for seven minute rushed appointments, rather than half an hour of working out what actually is the matter – means that the drugs bill is rising dramatically.

We all need to lobby MPs – and do something to make politicians realise that even the smallest cuts impinge on the least fortunate in our communities.

NHS has asked to find efficiency savings

At the Macmillan, Breast Cancer Care and Breakthrough Events this past month, fellow delegates all had tales to tell of longer waiting times, fears over cuts in Nurses, only 19 Specialist Nurses for Secondary breast cancer, and fears they may be cut, Carpal Tunnel Syndrome treatment threatened by Andrew Lansley (even though it can be the result of Aromatase Inhibitors), etc. etc.

Efficiency savings are going to come at our expense – somehow the idea that Administrators were going to be cut, but front-line staff were staying – has gone out the window.  Currrently many junior staff are being told their posts are to be ‘re-aligned’, and a Business Manager is coming in, complete with power point presentation, to tell them what is going to happen to their jobs.  Does this smack of more Administration?

Chancellor George Osborne has said: “The NHS is an intrinsic part of the fabric of our country. It is the embodiment of a fair society”. i.e  if you live in Westminster – you should be able to get treatment on the NHS.  But not if you live in rural areas, which are already seeing services cut, longer waiting times, etc.  He also said social care would get an extra £2bn over the next four years.  But already those receiving home care are getting extremely worried;  they have been warned there will be cuts, but don’t know where and when.

Financial pressures

I really wonder;  it is me? Don’t I understand the system, or should I have learnt by now that when a Politican says jobs will be protected – no cuts – etc.  is the time to get very worried?

So the incredible mess that is now the NHS stumbles along, and although one wouldn’t wish it on anyone, the only way the juggernaut will be bought to a halt is for MPs to get ill, and patients to lobby and lobby their MPs about cuts BEFORE they happen.

But rest assured, the White Paper will be adding to the chaos come December 31st.

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