John Prescott speaks lucidly in support of NHS Direct

I never thought the day would come when I would agree with John Prescott – but in an interview with the BBC, he says we

“won’t get reassurance” with the new call centre that is going to replace NHS Direct, “whether it is in UK or New Delhi”.

When NHS Direct started up, the quality of advice was often poor, as I soon discovered.

Bitten by a rabid dog, I was writing an article for the Daily Telegraph on the threat to everyone, and looked up every website I could to make sure I was as accurate as possible.  This is a disease that might – repeat might – have had ONE survivor – but otherwise every authority says that it is always fatal.

NHS Direct’s website implied that some of those bitten survived.  This might mean someone reading this advice would consider the odds were good enough in their favour, so chance leaving medical attention.

After lengthy emails, I finally managed to get them to change the wording (I did get the World Health Organisation involved!).  Since then they have been much more receptive to suggestions, and I find advice and information has improved.  This week, writing about a cancer hospital trying to say it wouldn’t allow patients to be on NHS and pay for private consultations, the advice I had from NHS Direct nurse was spot on, informative, accurate and efficient.

Now the Dept. Health is scrapping the service for a new number – 111 – andtraining new staff.

To view Prescott’s interview on BBC, click on

To hear his lucid interview on BBC, Click on

http://www.stevenfrear.co.uk/2010/08/29/save-nhs-direct/

Comment suggests with the new service, instead of 40% of the staff being registered nurses, the Call Centre operators will have 60 hours training.

One questions why scrap a service which has had a huge amount of money spent on it, and is now working so efficiently that it has even got John Prescott speaking lucidly in its praise?

For a service offered by staff who have had a week and a half’s training?

As Dr Peter Carter, chief executive and general secretary of The Royal College of Nursing, says:  “reducing the number of specialist nurses who work on the new helpline is “short-sighted. We urge the government to consult fully and look at all the evidence before enacting changes which could leave people without expert advice from trained nurses.”

So currently yet another ‘initiative’ is wasting our money, whilst they iron out problems in a copy-cat service.  What is it with politicians that they can’t stop meddling?

For me it’s deja-vu.  When my company was bought out by Sight and Sound, it ran 30% of Government training for unemployed people across UK.  The owner, Andre Sbath, wanted to use my training courses.

Eventually I was running pilot courses across UK;  when we had placed over 500 long-term unemployed in genuine work, I was called down to Whitehall.  Got a pat on the back – told that Govt. wanted to continue courses, but …. with the inevitable changes because pompous little Minister wanted to change what his predecessor set up.  Of course, under the new rules it didn’t work, employers weren’t interested, and the courses stopped.

If you want to sign the petition that John Prescott has set up, go to http://www.gopetition.com/petitions/save-nhs-direct.html

News on radio

It beggars belief:  the mid-day news had some apologist explaining that

1.  The 1-1-1- number will be easier to remember.

• a) easier for pranksters etc. to remember more like.
• b)  has anyone told Dept. Health that it is now possible for BT to re-route calls to any number seamlessly?

2.   The 1-1-1 service staff will be able to call directly for an ambulance.  Apparently, currently NHS Direct staff aren’t allowed to do this.  Simples – as the Meerkat says – just give NHS Direct authority to do this.  Or hasn’t anyone thought this through?

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.”

Background

• 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.

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!

Minister tours the country to hear staff views on NHS White Paper

Am I missing something somewhere?  I thought Andrew Lansley, Minister for Health, said he was going to cut waste out of NHS.

Yet here is his team announcing they are starting a tour of England, to hear first-hand the views of staff, patients and local communities on the NHS White Paper ‘Equity and Excellence: Liberating the NHS’.

What’s wrong with dusting down all the tons of letters that must be filed away in Whitehall;  patients complaining of hospitals such as Mid-Stafford, etc.  There have been other hospitals underperforming recently – John Radcliffe springs to mind – so why don’t Dept. Health look up correspondence?

Or better still, ask the Patients’ Association to provide an analysis of comments they receive.

Silly me, of course if Dept. Health sit in their offices reading often very lucid and sensible letters from patients, offering solutions to NHS problems, they won’t be having a lovely seven-day trip around Britain at taxpayer’s expense.  If you have the back of an envelope to hand,  even a basic three-star hotel now costs about £100 for a night;  say £20 for dinner (without counting wine) and £10 for lunch – let alone transport.  Multiply that by seven days X the enormous squad of accolytes every Minister how has running round him, all the NHS admin time to deal with a Ministerial visit (when they should be getting on with administering) and your envelope will be showing some pretty hefty sums.

One thing – there will be two lots of over-aid Hospital Administrators that will have to come in over the weekend – or will Sat/Sun be days of rest for the Minister to recover?  Hmmm.

And one wonders how many have actually had the time, or bothered, to read the White Paper.  61 pages (I gave up after page 12 of the same stuff as the previous papers), there isn’t much that’s new.  This is part of the Department of Health’s ongoing consultation process with third-party experts and patient groups.  (Didn’t Lansley announce he was sacking Consultants?)  However, it has only just come out, and most people I have spoken to say they haven’t had time to read it, let alone digest any recommendations.  So one would think this Grand Tour was a bit premature.  Unless of course you want a ‘Staycation’  – pity it’s raining at the moment!

Providing the obligatory quote for the press release,  the Dept. Health comes up with the old chestnut, apparently spouted by Lansley -“The NHS is free at the point of use.”  When will someone twig that the NHS is not free – it costs every tax-payer approx £2,000 pp.  per year.

He is right when he says “we believe that it can be so much better – for both patients and professionals”.   But until Whitehall has a firm hand on expenses, it will still cost more than comparable health services abroad.  And his PR team rather gave the game away.  Bearing in mind this release went out early in the morning, it commented on “the revolutionary centre I’ve seen today in Basingstoke.”

Er – must do better Minister.

Dr. Max Pemberton joins the debate on drugs

Since Professor Donald Light spoke on Pharmaceuticals:  A Two-Tier Market for Producing ‘Lemons’ and Serious Harm,  at the American Sociological Association’s annual meeting in Atlanta, Georgia, the medical press have been active.

Light stated that “five out of six”  new drugs offer “few if any new benefits”.

Dr. Max Pemberton, the Daily Telegraph columnist, picked up on this and commented in an article headed, ‘Why new pills are rarely the best medicine‘.   Saying he would like to tell readers this came as a shock, but  “I remember sitting in pharmacology lectures at medical school, being taught how drug companies would try to trick us into prescribing their latest wonder drug”.

Then went on to say that “a drug companies’ principle responsibility is to its shareholders”.

So if you are like me, and imagine the researchers that work for drug companies are inspired to follow in the footsteps of Alexander Flemming, etc., we may have got it wrong.

I have no quarrel with a drug company making a profit.  Research is incredibly expensive, and companies deserve a proper return for the money they invest in bringing a new drug to market.  But profits should be a fair return.  Reading annual reports, it is evident these companies are some of the most profitable in the world, making mega-billions.

When patients ask what nurses recommend to alleviate drug side effects, they are often told,  “I couldn’t recommend a commercial product” .  Yet ask nurses “then what about drugs?”  and they pretend not to understand.

We can often get a raw deal from these companies, even though they make their living from us.  Some companies even try to hide evidence from clinical trials, because it might be negative.  I went several months with carpal tunnel syndrome, never believing the pain could be caused by the hormonal drug I was taking.  Until reading some information on another drug, I realised that the one I was on had given me this weird but painful side effect.  When I phoned the drug manufacturers they had to come clean.  Yes, this had been reported as a side effect.  So I insisted information went into their literature, so doctors would know that it could be the drug causing this, rather than blaming our computers.

So if you have side effects, Dr. Pemberton says

“it does depend on someone – usually the doctor – being mindful that the pharmaceutical industry has a vested interest in persuading us to prescribe the latest drugs“.

Thanks Dr. Pemberton – nice to know some doctors are worried about this, and fighting in our corner.  We need you!

But we also need to be responsible, and realise that press items about a new ‘wonder drug’ might well be driven by the companies’ marketing team.

• The drug company might be part of a massive holding company.
• This company has other companies in its group, including cosmetics, over-the-counter pain relief, bath products etc.
• Knowing that a company is a big advertiser, I am sure editors will turn down press releases extolling the virtues of a new ‘wonder’ drug – won’t they?

So before we tear out the article and head off to the doctor to demand this drug, think.  Google.  Ask informed friends.  Look at who makes this, and read published information about clinical trials very, very carefully.  It is all on the Internet, but after you have read up on the drug, you may well decide to stick with the one you already know.

As Dr. Pemberton says, “this isn’t about rationing drugs, but about them prescribing responsibly.  It is, after all, the public purse we are plundering every time we sign our prescription pad.

More:  http://after-cancer.com/cancer-news-short-stories/do-doctors-dismiss-adverse-reactions-to-drugs/

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.  http://after-cancer.com/exercise/bikram-yoga-is-not-healthy-for-madonna-claims-celebrity-yoga-trainer/

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.

www.nydailynews.com/lifestyle/health/2010/08/21/2010-08-21_breathe_deep_yoga_may_be_a_boon_for_life_after_breast_cancer.html#ixzz0xIcoIR2V

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.

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.   www.clinique.co.uk

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.

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.
http://www.zapsurvey.com/Survey.aspx?id=ceaf8300-e1e6-4da1-a846-0f0952485d25

Pour participer à l’enquête en français cliquez ici
http://www.zapsurvey.com/Survey.aspx?id=0d6dc755-52eb-4667-ac80-93107c277d56

Zur Umfrage in Deutsch bitte hier klicken
http://www.zapsurvey.com/Survey.aspx?id=5ec1bc7e-4feb-422d-8f85-4931a7fb9486

Per completare l’indagine in italiano fare clic qui
http://www.zapsurvey.com/Survey.aspx?id=651206ed-d78d-4db5-84d2-5743acfe4e80

Para completar la encuesta en español dé clic aquí
http://www.zapsurvey.com/Survey.aspx?id=a264ce5e-8f67-4a68-aa4b-41d6942f2417

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!)