Category Archives: Cancer News (short stories)

NHS PR loses out big time over Ashya

Public Questions NHS Big Brother approach over little cancer patient

A frightened 5 year old lies in a hospital bed, denied visits from his family, whilst his parents languish in jail waiting to hear what are their bail conditions.

Meantime the clock is ticking down on the 4 months doctors say this little boy has left to live.

When the story of Ashya King first broke,  (he was suffering from a form of cancer in University Hospital, Southampton), at first public opinion seemed to be on the side of NHS.   The Public believed that

In a typical treatment plan for proton therapy...

when a child was suffering, the NHS would be the body to treat them.

But then public opinion, aided by Social media, comments on TV shows such as The Wright Stuff, and unease that seemed to be expressed by the spokesman for police called in by the hospital to search for the little boy after his father had removed him from hospital – swung the other way. Continue reading

Rugby star slams NHS

Good for Laurence Dallagio

Never afraid to tackle opponents on the Rugby field, he now takes on the might of the NHS.  And with

English: Lawrence Dallaglio Français : Lawrenc...

the following he has as an all-time sporting hero, he might be listened to. Continue reading

New ways to relieve Joint Pain

Try this – you can buy it over-the-counter  (OTT

 

Don’t you feel a bit let-down when you find out

 

something – and all your friends know it already? !!

Well, on holiday I took a can of Deep Heat, and placed it near the top of my suitcase (for easy access).heat_spray

 

Continue reading

Well done, Scotland – pity NHS England won’t copy

Live in England?

English: NHS logo

Tried using 111 telephone service?

This service replaces NHS Direct.  Which was working perfectly well, using health professionals to answer calls.  Whenever I called I found staff were excellent. Continue reading

Crisis in NHS data collection?

Atos

Fitness to work’ firm wins care.data contract

Do a bad job, and you are awarded more work.

Atos has just been awarded the contract to extract patient records from GP’s surgery information.

The same firm that was handling enquiries into benefit fraud – ‘Fitness to work’  (FTW)

There has been much in media about the way Atos handled enquiries re FTW.  My experience was upsetting.  I have Neuropathy, as a side effect of cancer drugs, mean I can only shuffle – I look as though I am drunk when walking!  So am lucky enough to have a disability allowance that pays for help with heavy jobs around home.  Am phoned by office to ask questions re my benefit payments.

After name, address etc., we get down to basics.  What disabilities do I have?  Which is oldest?

Polio.

When did you contract that?

In 1956.

“Oh. So you are well over that”.

If the question hadn’t been so stupid, I would have laughed.  However, I felt deeply insulted, as for fifty years I had had to live with consequences, work hard to overcome them and live as normal a life as my condition allowed. Once muscles are affected, you don’t get over consequences.

So I terminated conversation, and told questioner I would only answer questions on my medical condition put by someone who was medically qualified, and wouldn’t insult me.  However, am sure that there are many OAPs who would have been scared to take similar action.

Complaints galore

Currently, the company is seeking “an early release” from its Fitness for Work contract.

And has been ‘awarded’ the contract to extract patient records from GP surgeries under NHS data sharing scheme:  care.data.

Make a hash of one contract, get your payment and go on to next.  Nice work if you can get it.

verite@greenbee.net

NHS bullies on the war path

image of Verite Reily CollinsNow it’s caring GPs who feel their anger

The headline in the Daily Mail said:

NHS ‘bullies’ threaten to axe GP for keeping his patients’ records private”.

Hurrah for Dr. Gordon Gancz,  a caring-sounding Oxfordsire GP.  According to the story, his Practice website had put up a succinct and brilliant explanation of the latest initiative to come from the NHS, on his King Edward Surgery, Oxford, website notice board.  This concerns THE NHS’s collection of our medical history, called care.data.

How he managed to collect all the information, I don’t know, as the NHS is being secretive. But there, in clear view, is a link through to the appropriate NHS website – and an explanation of why the Practice was so concerned on behalf of patients.  Having tried, with not much success, to get a clear explanation from the NHS’s Press Office of what was happening (three weeks, five emails and eight phone calls before I received the official literature), I was very interested to read this.

Cost                                                                                                                                                          Far too much of our private data is floating around in cyber space, ready to be used by those with vested interests, thieves, pharmaceutical companies, etc. and the lack of official knowledge re care.data is worrying.  The only clear info I can get is that so far it has cost to cash-strapped NHS £2.5 million to send out explanatory forms (which none of my neighbours has received)- and that’s just for the “44 million leaflets sent out to all household in UK”.

Funnily enough, no-one I know has received this.

Then Feb. 8th’s Daily Mail says cost to us so far is £50 Million – and the NHS cries poverty..

When I phone the Dept. Health’s Press Office (the NHS’s masters and seat of LaLa Lite [Minister Jeremy Hunt], they tell me they don’t know anything about care.data  (they obviously haven’t received a leaflet through their letter box), but “I’ll Google this and give you their Press Office contact”.

Who might  make money by using your data?

An IT industry guru told me he would be very, very concerned if he were aged 25 – 50, a car owner wanting an insurance quote, or medical insurance.  And it worried him what use could be made of one’s medical data.

I have received two emails in last two days offering me 600 Euros (£500) OFF if I register immediately for a conference on sharing NHS data.  As enquirers (drug companies, etc) will be handed our NHS number, our post code and area where we live, it won’t be difficult for companies to get our names very quickly.  If you don’t believe me, how many emails have you received recently that you know are suspect?  And mention things about you that you thought no-on knew? Where did they get your information from?  It is incredibly easy to fbnd this data today, especially if the enquirer has a date of birth and area here someone lives – and giving them one’s NHS number makes it even easier (and why do enquirers need that?)

Dr. Gordon Gancz sounds a caring, sensible GP who bothered to investigate what the NHS were up to – and if the NHS are going to penalise him, I hope all the Undergrads, Graduates and Dons in Oxford rise up in his support.  Now today comes news that other GPs who may follow suit are being threatened with the sack;  others telling their MPs the NHS is using “Big Brother” tactics.

Isn’t it about time the NHS realised it is a health service set up for OUR benefit – and not a money-making service?

verite@greenbee.net

How NHS will make money from OUR data – but we will have difficulty seeing this

nhs

You can’t hide any of your private data today.

But the NHS is going to make money from collecting

our private Medical data in one easy-to-access form .

My email pings open with an invitation to a conference in London:

Did you know that NHS, NICE, G-BA, HAS, AETS, EFPIA, Bayer, AstraZeneca, Pfizer, J&J and representatives from many other organisations are expected to gather together in April for the second annual Real World Data conference! 

At the event delegates are expect to learn how to create the perfect evidence story and practical steps to creating Risk Sharing Agreements. Your are urged”  find out the most imperative reasons that explain why your competitors have already confirmed attendance”.

As The Guardian says, pharmaceutical and drug companies will be able to access out data.

This could include private information that you might not want others to access.

Cost?

Early registrants benefit from a €600 discount!  
This is obviously a profitable field, and costs range from around £450 –
over £2000.
Makes you think.
And I am not alone
Many expert are worried what the NHS is going to do with all our private data. I wrote about this under https://aftercanceruk.wordpress.com/wp-admin/post.php?post=14625&action=edit
Dr. Max Pemberton in Daily Telegraph of February 10th expressing concern over ‘Big Brother’ threatening tactics towards a caring GP, concerned enough about this data that he has told his patients that he is opting everyone out, until they tell him they want their data submitted.  “in trying to squash  Dr. Gancz’s rebellion, NHS bosses have made him a cause celebrate for those who feel the Government is becoming Big Brother-ish and dismissive of people’s concerns about confidentiality and privacy”.
And Daily Mail of Feb. 8th quotes ‘NHS Data Expert’ Prof. Sir Brian Jarman saying “insurance and drug firms would be able to identify patients ” from this data.  So be prepared for even more junk mail to clutter up our letter boxes.  Their Dr. Brian Scurr also has very factual piece, in which he warns readers not to delay if they wish to opt out.
verite@greenbee.net

 

How I lost weight

After Tamoxifen piled on the kilos

Like most fellow cancer patients, I felt pretty glum with extra weight piling on ……..

Until I decided to stop calorie counting.

fruitIn the back of my mind something was niggling, so I decided to ditch ready-meals and ‘Light’ products; and anything that advertised itself as ‘natural’; ‘healthy snack’ or fet-free I looked at very carefully.

Look at the contents list on packaged food, and see how high up sugar or sugar-substitutes are listed;  the higher up the list the more sugar in the product.

Instead I was going to opt for fresh veg, easy-to-prepare meat and egg dishes, and ‘ordinary’ yoghourt. Oh – and I use butter instead of ‘Light’ spreads.

Three months later when a Nurse announced the dreaded “we need to check your weight” – there was something wrong with the scales (so I thought).  I weighed two kilos less than my usual blub.  Next time another couple of kilos had disappeared – until a year after I decided to stop counting, I found I had lost nine kilos. I have no idea if my ‘new’ regime was the foundation, but my skin certainly is clearer, and I am less blobby! All because I had stopped worrying;  no more calorie counting – no ‘reduced fat’ products, etc. Instead, I found I was less hungry;  didn’t constantly want to snack, and was eating less ‘guilty’ products.

So what was I eating?

Organic ‘whole’ milk; butter and olive oil, not spreads, tomato juice instead of Smoothies and orange juice;  no ‘Ready Meals’ – instead I make my own with organic veg and fresh meat.  I don’t often eat Pork or bacon, but do eat free range chicken and fish. Now, I sometimes pick up a ready-prepared meal – read the list of ingredients and hastily thrust it back. Actually reading the list really puts you off!

I don’t often eat ‘fast food’, especially curries and own-brand pizza (which often contain hidden sugar to enhance flavour).   According to the Daily Mail, Tesco’s Thin Crust Hawaiian Pizza contains 4 tsps sugar; Sharwoods Sweet and Sour chicken with rice a massive 5 1/2 tsps sugar.

I avoid yoghourts, cheeses etc. that say they are ‘Light’;  instead I eat a smaller portion of ‘proper’, old-fashioned yoghourt, cheese etc., and not only does this seem to work but it tastes better! But I am well in to dark chocolate – never Milk. But find I don’t grab a snack so often.

And I try and avoid fizzy drinks and ‘sports’ drinks  – many contain lethal amounts of sugar.

And I have lost 9 kilos !

verite@greenbee.net

How DARE doctors blame us for addiction

OnlineDoctorAmend

Doctors call us a nation of pill poppers

But they are the ones who prescribe the pills in the first place

When I fell and landed with a very painful fracture, I was prescribed a heavy dose of Tramadol.  The fracture was a possible result of Osteoporosis – this was probably result of being  prescribed a cancer drug which induced Osteoporosis.

After the initial incredible pain relief, i began to realise that I was becoming dis-orientated;  the pills were having nasty effects, and I realised I needed professional advice to work out a balance between pain relief and possible addiction.  So I called my GP.  When he finally called me back, I asked to be referred urgently to the Pain Clinic at the local hospital.

They couldn’t give me an appointment for three months.

So called the surgery back.  When the doctor finally called me, I asked for an urgent referral.  He couldn’t do that, but would prescribe me more Tramadol, and suggested I take this for next three months until I could ask the Pain clinician what to do.

Next day friends had to call 999;  I had fallen again, as was so dis-orientted as an effect of the Trmadol.   A & E prescribed Diclofenac, and sent me home covered in faeces and vomit.  No attempt was made to clean me up, and luckily I wasn’t strong enough to open the blister packs for Diclofenac.

So next morning, I was really frightened;  having had major, major heart surgery (as a side effect of one of cancer drugs), I knew enough to know I should never had had this prescribed for me.  Went to ask advice of a private doctor, who took one look at me, and said “Have you seen a pain specialist about this?”  Explained about three month wait, so he lifted up his mobile and spoke to a friend to tell him he HAD to see me that day.  Then sent me to see Dr. T., who only happened to be in charge of Pain Clinic at local hospital.  I would have seen him on NHS if I had waited three months.

That afternoon I was shown into Dr. T’s comfortiing presence, and in a long appointment he worked out a sensible regime for me.  Three days later I was off the heavy pain killers, and was down to Tramadol 50 wheh I needed it – which soon faded into never.  Dr. T kept in touch with me by phone over the weekend, and said I was to call him if I felt any more pain, or wooziness.  Touch wood, pain has disappeared.  And three boxes of expensive Diclofenac went into the waste paper basket – what a waste of NHS resources.  It was worth every penny I paid, but why do NHS blame us for addiction?  If I had followed my NHS GP and continued with Tramadol 200 for three months, I dread to think what an addict I would have become.

So DON’T blame us as addicts – or for expensive prescription errors.

P.S.  At follow-up meeting, doctor told me next time to take anti-emetic, before I take pain killer tablet.  This would probably prevent side effects from pain killers.  So take prescription to NHS GP;  he not only gives me this – no question – but also sends a box of Naproxen – which I had NEVER requested, and have read that this can be dangerous for someone with my heart problems!  You’ve got to be strong to survive some treatments!

verite@greenbee.net

Macmillan survey highlights shocking truth with cancer survey

we-are-macmillan-green

Macmillan Survey Reveals Shocking Truth

Wouldn’t you think London, being the Capital of the UK, would have the best cancer hospitals?

Don’t hold your breath ……..

If you have been treated at the hospitals listed below, and were unhappy with your care, you are not alone.

A recent survey by Macmillan cancer charity lists

The 10 ‘worst performing’ trusts

  • 1) Imperial College Healthcare NHS Trust
  • 2) Barts Health NHS Trust
  • 3) Croydon Health Services NHS Trust
  • 4) Barking, Havering and Redbridge University Hospital NHS Trust
  • 5) King’s College Hospital NHS Foundation Trust
  • 6) North Middlesex University Hospital NHS Trust
  • 7) St George’s Healthcare NHS Trust
  • 8) Whittington Health
  • 9) North West London Hospitals NHS Trust
  • 10) Dudley Group NHS Foundation Trust (West Midlands
  • The survey says “)Hospitals often did well in treating cancer but fell short in care afterwards, NHS England said.”

Is Arrogance the cause?

Patient survey after survey highlights the mantra ‘`no-one listens to me’.  When I was treated at a major London hospital, a nurse told me “you are ONY a patient’, when I dared to query treatment.  Sp I went off to France (where on average cancer patients live 4.6 year longer than UK patients) and was listened to.  But how many of us are lucky enough to have a job that allows us this freedom?  Usually we have to put up with the bad care that is dished out.

But now, Macmillan has confirmed our fears;  so we can wave the evidence under the noses of arrogant doctors and – not so often – nurses.  And INSIST that we are listened to.

Behind the Survey

To get this result, Macmillan analysed a nationwide survey of 68,000 people and found care standards fell “lamentably short” in some capital hospitals.

Patients were asked about issues such as whether they felt well supported, informed and were treated with respect.

NHS England said the findings were “disappointing” but were being tackled.

Caroline Alexander, the chief nurse for London, said: “We do well in treating the illness.

“But often we fall short in caring for the individual and giving patients and their families the support that they need.”

And remember, doctors say that those of us who complain, have better survival rates.

Write to tell me I’v got it wrong:   at verite@greenbee.net  !!!