Monthly Archives: November 2011

How to get treatment when GP says funds aren't available

CANCER PATIENTS

NHS logo

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HAVE A RAW DEAL

Particularly if they

have Lymphoedema

This nasty condition often comes as an after-effect of cancer surgery.

The swelling can be treated – sometimes successfully – but as cancer patients don’t complain (much) the NHS in its wisdom has closed down many clinics.

Recently a nurse told me treatment is excellent in the Coventry PCT area;  next door, in the Nuneaton PCT area, patients are told it is not possible to treat Lymphoedema.

If you can’t find a clinic, take advice from

Lymphoedema Support Network   www.lymphoedema.org

020 7351 0990

All of their incredibly efficient office staff are helpful, even though they run on the proverbial shoe-string.  I spoke to Anita.

Step-by-step she gave me instructions, which I added to when I had contact, and eventually got me superb private treatment, paid for by the NHS!

These steps were:

1. Ask your GP for help and referral to a Consultant – these are usually to be found in specialist cancer hospitals, so it might mean doing some travelling.  Believe me, it is worth it, particularly as OCCASIONALLY your swelling might not be down to cancer, but it could be caused by drugs you are on, or other causes.

2. If the Consultant says treatment will be of benefit, ask if this is available locally.

3. if not…..Contact your local PCT.  Your GP should do this, but if for any reason they won’t, you are entitled to do this.  Find out their address by Googling your area name and PCT, or look them up in phone book, or ask your Town Hall.

4. If the PCT says this treatment is not available (more than likely) get on to your MP, and ask for their support.

5.  Give your MP two weeks to reply and suggest writing on your behalf. Mine wrote, the PCT wrote back saying they would fund treatment “in an NHS hospital”. This is catch 22 as they have probably closed down the NHS clinics anyway. Your local cancer hospital might have a clinic, but mine wrote to say theirs was for In-patients only. As Lymphoedema usually doesn’t turn up until you have long left hospital, they know they are relatively safe and you won’t qualify.

Or you are referred for bandaging and special garments.  These may, or may not work on you.  They didn’t on me – having had polio it was a daily struggle to put these on;  the tight elastic they are made of aggravated my sore skin, so eventually it was impossible to wear them.

It was decided that MLD was only method that would work on me, and NHS doesn’t want to offer this as initially it is more expensive.  The fact that in the long run it is cheaper doesn’t worry them.

So it was time for next step.

6.  Get on to your MEP (Member of European Parliament). These are surprisingly powerful.  You find them by Googling MY MEP.

Mine was very supportive, wrote to the appropriate PCT to say I was entitled to treatment, and within two weeks I was starting a course of MLD (manual lymphatic drainage).

9.  In my case the PCT caved in almost immediately, and agreed to fund treatment at a private hospital. Most private hospitals with physio departments will offer this, but make sure the physio has been trained in the Vodder method – the best (as far as I know). Currently I had two courses funded – almost all the pain has gone and now I only get limited swelling – and am gearing up to fight for a last course to clear it up completely.

However, there is another type of treatment which is being offered at London Bridge Hospital (a private hospital).  Talking to their nurses, it seems that this could be even more effective, so would suggest you contact them for more information.

If you feel like it, the Klinic Bad Sulza (see under Spas – Germany) offers excellent treatment, but as you need to take an 18-22 day course, you must be able to pay for that long a stay in this private clinic (around £120 per day all-in).

And good luck.  Read through the notes above.  You will probably have to write two letters – and that was all I did.  It was surprisingly easy once I had got in touch with my MEP.

 

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Cancer Survivor named Woman of the Year

 

Val Armstrong is Woman of the Year

 

 

The BBC radio presenter Val Armstrong has been named Cumbrian Woman of the Year
Having been diagnosed with breast cancer for a second time, the 47-year-old decided to make her fight with the illness public, to help other women.

The organising committee for the Cumbrian Woman of the Year said she had used her “honesty and humour” to reassure and encourage other women, as well as being a voice for the county.  Chairwoman of the organising committee Tess Hart said: “We choose one lady to represent all those ladies, and for her stoicism, for the voice she has and the friend she is to people who have never even met her, she has been a shining example to all Cumbrian women.”

What it means to Val

Although used to being in the limelight because of her job, Val Armstrong said: “I am still in shock. There are almost 100 women in the room behind me and every single one of them has a story to tell. They are amazing women.

“For me to be chosen among them, to actually be included to be with them in the first place I was shocked, but to walk away with this is just fantastic.”

Winners of the Cumbria Woman of the Year title are nominated by the public before being reviewed by the 20 volunteers who make up the organising committee.

Good News
In a week when NHS staff were about to go on strike;  friends and family were paying for relatives to have private nursing on wards, and stories of Trusts refusing to fund cancer drugs, Val Armstrong’s smiling face showed that you can beat cancer twice over.

All during her second bout of treatment for breast cancer, she has kept her sense of humour, and written a much-loved diary on the BBC website.  This detailed all the ups and downs of treatment, but also included information about her beloved football team, and what she had to do to follow them to Wembley.

She also took part in a massive motorbike ride for charity, and detailed all the planning that had to go in to that, not least what gear she would be able to wear.

And for more – go to

http://www.bbc.co.uk/news/uk-england-cumbria-15889232

 

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Finding work as a Cancer Survivor

Helpful Agency ~ At last! 

 


 

 

Evenbreak, a not-for-profit social enterprise, was formed to address two problems:

  1. Employers recognise the business benefits of a diverse workforce, but say  they find it hard to attract disabled candidates.
  2. Disabled candidates find it is hard to find employers who will look beyond their disability.

Jane Hatton, MD of Evenbreak, faced these difficulties, set up her own employment agency, and is now attracting companies across the board.

Current jobs advertised on her site include some with salaries in excess of £40.000 pa.

Deciding to change jobs, it can be difficult to find something that pays a decent wage.

  • Your brain is still active.
  • The skills you needed to work in a highly-paid managerial job are still there
  • It’s just you don’t have the stamina or energy to work full-time
  • Or you need to work from home.

What’s available

Jane has gone out into the workplace, and found socially responsible companies that want to employ those with disabilities, and are very willing to offer flexible working conditions.

Evenbreak’s recent clients include the BBC, the Royal Shakespeare Company, Yorkshire Water, Zurich Financial Services, Euromixers, Centre for Independent Living, Smiths Medical and the Royal Bank of Scotland.

However, Jane is brutally honest;  a current job is for a Senior Test Engineer in Greater London, and she warns “Opportunities like this are rare, and if you’re not the best tester that you know, you’re probably not the person we’re looking for”.

Current Sample jobs:

SharePoint Developer ; Field-based Employment Advisor  in Avon (Part Time);
P.A. Administrator.

Other fields in which Jane has found jobs include:

Accountancy; Agriculture, Animals & Environment; Automotive, Driving & Transport;
Banking, Finance & Insurance; Catering & Hospitality; Charity; Construction & Skilled Trades; Customer Service & Call Centre; Distribution & Warehouse; Education & Teaching
Engineering; Freight and Logistics; HR & Recruitment; IT; Legal; Marketing, PR & Advertising; Project Management; Scientific & Pharmaceutical; Utilities, etc. etc.

On-site Information

There is information on the Access to Work scheme, and how it helps employers with the costs of providing reasonable adjustments for disabled employees.

And advice on updating your CV, and deciding how and when to declare a disability.  As she says, “There is no obligation for you to disclose a disability – it is your own decision. However, there are some things you might want to consider in making that decision”.

Volunteers needed

Having been working for some years, you know your worth – but does anyone else?  It seems all that’s on offer is shelf-stacking in the supermarket, or numerous voluntary jobs churned out in Macmillan emails.

You get these because you read that Macmillans has paid and voluntary jobs available.  You  fill in your CV, but once you have done this, it seems all you can be given is ‘expenses paid’ work.

Macmillan was instrumental in setting up the National Cancer Survivorship Initiative;  four years on there is still no help available for finding jobs – only lots of headings with no solid information for GPs, professionals or yourself.

Good news

But thanks to Jane, there is someone out there doing what she can to help us get back into work.  Of course, she doesn’t have the millions that the NHS found available to supposedly help survivors (and as a survivor I tried to find out what’s happened to this – but you can guess…..), but she was a Finalist in the Stelios Disabled Entrepreneurs Award, and being disabled herself knows the snags – and how to persuade companies that they can offer us jobs.

www.evenbreak.co.uk     0845 658 5717

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Andrew Lansley Rap – or you can watch him on hospital TV

Listen to the Rap –

Warning – use ear defenders

and keep a teenager in the room to translate.

But it gets funnier and more understandable as you go along.

 

If this wasn’t bad enough, wait until you see this……

The NHS has a new weapon

They want to send you home quicker, and save money.

So Andrew Lansley’s face will stare down at hospital patients from their bedside TVs – and if you don’t like it you pay £5 to register and turn him off!

Trying to contact the providers, Hospedia, to ask why?  They were strangely silent.

So not only are you to be chased from your bed by Lansley’s glare – if you don’t like it you  pay the NHS to turn him off.  So it’s a win-win situation for hospitals.

What the papers say

Should you have the misfortune to be hospitalised you will now be greeted by a never-ending video of Andrew Lansley. The Health Secretary’s face appears on bedside screens on a permanent North Korea-style loop, welcoming patients to hospital and asking them to thank NHS staff for looking after them.

To turn Lansley off, patients must register under a pay-as-you-go system which sees them charged £5 a day to access television, email and phone services. Those who do not register are continuously greeted by the Health Secretary saying:

Hello, I’m Andrew Lansley, the Health Secretary.

 I just want to take a few moments to say that your care while you’re here in hospital really matters to me. I hope it’s as good quality care as we can possibly make it and I do hope you’ll join me in thanking all the staff who are looking after you while you’re here.

Give me the Rap any day.

The Independent reported that “In some wards with multiple beds, the screens have the effect of a television showroom, with dozens of Lansleys staring down on the ill.” One man who visited an elderly relative said: “It was eerie. Everywhere you looked there was Andrew Lansley. My mother-in-law had to keep topping up the machine just to escape him.”

Lansley appeared on Today to defend himself, saying he wanted patients to have “as comfortable and as high quality a stay as possible” (a pledge that sits uncomfortably with Lansley TV) and to ensure that they thanked NHS staff. But shouldn’t praise be voluntary? And what of those patients who suffer inadequate care?

Somehow I don’t think  Secretary of State TV is going to rival Strictly Come Dancing.  But anyone who can work out how to turn off Lansley, without costing a fiver, deserves a medal.  Lansley himself didn’t know how when interviewed on Today.

Stop Press

Natalie Howells, Marketing Communications Manager of Hospedia emails me to say:
“Patients can switch off the informational video in one of 2 ways. Firstly, registration costs patients nothing and provides them access to free radio services. Secondly, each bedside system has an off switch on the front of the screen, which can be used to switch the bedside screen off”.

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Brain fog or chemo-brain

Animation of an MRI brain scan, starting at th...

Image via Wikipedia

Side effect of drugs

 

can cause

 

 

memory loss

 

During treatment, many cancer patients forget more things than usual.

They find themselves thinking they must be getting old, as they keep on forgetting people and things – doesn’t this come with age?

Brain ‘fog’ or ‘chemo brain’

Well no, it doesn’t.  A recent study suggests Cognitive impairment in breast cancer patients — sometimes called “brain fog” or “chemobrain” — results from the disease itself, although chemotherapy makes it worse.

It was only a small study, but Shelli R. Kesler, PhD, of Stanford University in Palo Alto, Calif., and colleagues proved what many cancer patients have suggested all along.  Compared with 18 women with no breast cancer history, 19 who had the disease but were not treated with chemotherapy showed significant deficits in prefrontal and premotor cortex activation.

Another 25 breast cancer survivors who had received chemotherapy showed even greater impairments, with the most pronounced effects in the left caudal lateral prefrontal cortex, the researchers indicated in the November issue of Archives of Neurology.

“These findings provide further evidence of neurological impairment associated with primary breast cancer irrespective of treatment history,” Kesler and colleagues wrote:

Breast cancer survivors have long reported that their thinking was slower and muddled following treatment. The effect has been confirmed in scientific studies, but whether it was related to treatment, or to the disease itself, was unclear.

So for those of use who want a scientific explanation, here goes:

Kesler and colleagues recruited 44 breast cancer survivors and 18 healthy controls matched for age, menopausal status, and education level. Participants underwent functional MRI scans while performing a card-sorting task in order to measure brain activation in specific regions. They also were evaluated with a series of other neurocognitive tests, including one to identify potentially confounding psychiatric symptoms such as depression.

Just over half of the 25 survivors who received chemotherapy also had radiotherapy. Among the 19 without chemotherapy, 13 had received radiation treatment. Half had taken tamoxifen, so this also refers to Hormone Therapy treatment, as well as chemo.

Median time since treatment ended was about five years. About three-quarters of all three groups were postmenopausal.

Brain activation, as measured by fMRI, was similar among the three groups in most regions. The exceptions were the left middle dorsolateral prefrontal gyrus extending into the left inferior frontal gyrus (Brodmann area 10/46), the left caudal lateral middle frontal gyrus (Brodmann area 8), and the left medial frontal gyrus (Brodmann area 6).

In Brodmann areas 10/46 and 6 — the prefrontal and premotor cortex — activation was significantly impaired in both survivor groups relative to controls.

In Brodmann area 8, the chemotherapy group showed significant impairment relative to the nonchemotherapy survivors and controls.

Secondary analyses indicated that, in the chemotherapy group, reduced activation in the left caudal lateral prefrontal cortex was associated with higher breast cancer disease severity and with increased severity of patient-reported “brain fog.”

Performance on the neurocognitive tests was generally similar between controls and the nonchemotherapy survivors but impaired in the chemotherapy-treated patients. In particular, the latter group showed more perseverative errors on the Wisconsin Card Sorting Test and they took longer to complete the test.

The chemotherapy group also had significantly higher scores on the Behavioral Rating Inventory of Executive Function, reflecting greater subjective perceptions of impairment.

Chemotherapy also appears neurotoxic to specific regions within the brain, the researchers indicated — in particular, the Brodmann 8 region, which previous studies had found is involved in switching attention according to learned rules.

Results of the current study found correlations between completion time for the card-sorting test and Brodmann 8 area activation. “Individuals with abnormalities in this area would be expected to have difficulties in flexibly shifting between response options and/or to experience slower processing speed during rule-governed tasks,” Kesler and colleagues indicated.

What happens

That these women also had more errors, despite taking more time with the test, suggests that “slowing down is a first compensatory approach that no longer works when the disease has advanced to the point that increasing prefrontal damage has been incurred,” the researchers wrote.

They concluded that “primary breast cancer may cause measurable brain injury.”

And – The National Institutes of Health supported the study.

So it’s NOT old age that makes you forgetful – blame it on chemo and other drugs.

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Hacked off NHS moles are coming up from their tunnels

See http://www.nhsManagers.net

 

 

This website is well worth watching.

Edited by Roy Lilley, PPA ‘Columnist of the Year’ – Finalist, he manages to make sense of what is happening to the  Health Bill, that LaLa doesn’t want you to know.

Golden sieve

Image via Wikipedia

Roy’s latest article comments that in this new commercial world, if the Department of Health were looking for a logo, they could do no better than “choose a gold plated sieve”.

Why? Roy says “there’s been another major leak”.

Then says, “you have to ask why people leak things.

Why do they risk disciplinary action, maybe even their jobs and careers to do it?

It’s easy to think it is because people think something is wrong and they want to bring it to wider public attention. It’s a bit about that but I think it is more”.

It takes a lot to shove a document into a scanner, put it on a stick, take it home, set up a Hot Mail account with a gobbledygook name and send it out. You have to be brave, determined and thoroughly aware of what you are doing and the consequences. And, you have to be pretty hacked off.

On a Scale of 1 – 10

It is impossible to measure ‘hacked-off-ness’. For convenience I have invented the Lilley Hacked-Off Scale; one to ten. Judging by my post-bag I take the general level of most readers hacked-off-ness to be about eleven out of ten. I’m thinking of recalibrating already.

I don’t think anyone has recovered from LaLa’s pledge of no more top-down reorganisations only to be faced with the lunacy of what followed; redundancies, 364 pages of Bill and the ‘Pause Fandango’.

Then a creeping realisation that the NHS will have all of its hospitals run off-shore as FTs, community services hived-off and the excesses of Monitor who seems to think the NHS should be run as a utility company.

Channel 4 gets in on the act

Throughout it all I was daft enough to think GPs would come good and do the right thing. That went out of the window when Ch4 did its Go-Johnny expose and Lovely-Jubbly appeared in the NHS lexicon.

Well, Ch4 have done it again. Any thoughts that GPs would have any real influence over commissioning has gone out of the same window. Somebody who is about 15 on the ten scale of hacked-off-ness has leaked a document. They made a programme insert about it on the Ch4 news, last night.

We have a copy; here it is. It is the final draft of a document being developed by the DH called ‘Towards Service Excellence’.

http://www.channel4.com/news/leaked-document-shows-how-doctors-can-profit-from-nhs-reform

In any other setting it would be comical in that it recognises what we all know; GPs can’t commission healthcare or run commissioning. Under the arrangements proposed in the document they will have precious little to do with it. It understands that buying healthcare has to be done at scale and pretty well reinvents SHAs.

PCTs will keep going, providing interim commissioning ‘support’, doing what the GPs know they can’t do, but it is clear that the expectation is they will prepare the way for the private sector to come in and take over most of the commissioning and back office functions and provide a service to several CCGs. An elaborate pathway is mapped out for their entrance. PCTs may have a shot at evolving themselves into commissioning support businesses but they won’t stand a prayer against the McKPMGs of this world.

The document makes depressing reading

Not depressing because it is about the private sector.  Depressing in that it describes a convoluted, wasteful, labyrinthine attempt to stick together the broken fragments of the NHS and put it back on the shelf, where it started.

It has a desperate tone and seems to me to be driven by the knowledge that the NHS is on the brink of a nervous breakdown. If you are a Go-Johnny you won’t like it either. It describes an NHS far removed from LaLa’s original idea.  GPs will have little to do with anything.

I read it more in sorrow than in anger. What a terrible waste of money and time this has been.

As Roy says, take some time, see for yourself what it says and whisper a silent thank you to the brave soul who was hacked-off enough to see if you’re as hacked-off as they are.

 

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Laugh 'til it Heals

Christine K. Clifford

comes up with

another winner

 

Never one to miss a good opportunity to laugh whilst having cancer treatment, Christine Clifford believes in a certain Dr. Siegel, who said,

“show me a patient who is able to laugh and play… and I will show you someone who is going to live longer”.

And throughout her new book she comes up with one-liners, two-liners and lots-of-liners that make you laugh out loud, from

Shouldn’t they call it a HERSterectomy?

to one that pokes gentle fun at doctors who consider themselves superior beings, via a description of The Pope:

His Holiness is at the Pearly Gates, not best pleased at having to wait in line.  He sees a man with a stethoscope walk to the head of the queue, and to his astonishment he is let in before everyone else.

He demands to know why the Guardian Angel allows doctors in before him.

The Angel answers, “that was no doctor.  That was God.  He just liked to pretend he is a doctor”.

And whenever you come across one of those pompous beings, I can promise you you will remember Christine’s story – and smile.

Or there was the woman who woke up and thought she was dead.  Why?  Because nothing hurts.  (We can all smile at that).  Or I let out a loud laugh when I read about the woman who insisted she wanted Whoopee cushions placed on the pews at her funeral.

Laughing all the way – that’s the best medicine.

Laugh ’til it Heals  by Christine K. Clifford

 

 

 

 

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Christmas Hampers for friends with cancer

The luxe housewarming hamper

Go to town with decoration Flickr

How to pick a

Hamper

of goodies

 

Looking for a Christmas present for a friend who has canncer?

Have fun making up a Hamper of foods that are supposedly healthy.

I say ‘supposedly’ for good reason, because NO food can be said to cure cancer – don’t believe those that say it can.

However, there are some foods that doctors and researchers say good things about – and eating them (provided the patient likes the taste and the taste doesn’t conflict with drugs) can only be of benefit for one’s health – as well as being tasty.

Container

First, try to find something to use as a hamper that can be useful afterwards.  Baskets that can be used for shopping/keeping things in are always welcome.  Or you might find an old box and decorate with fun symbols;  or one of those smart linen baskets – have a look round your nearest department store and ideas will leap out – promise!

What goes inside

All these foods have had good things written about them in medical research – just DON’T  make any claims.  Treat this as a fun exercise – that’s what it’s supposed to be.

Ginger:  nurses say nice things about this – so look for ginger nuts (biscuits or cookies); ginger tea; a ginger root;  cans of old-fashioned ginger beer or a bottle to take the place of the usual bottle of wine (but only if the recipient has a sense of humour!)

Marmalade:  researchers at the University of Arizona had nice things to say about orange and grapefruit peel Marmalade, and after all, the name supposedly came from ‘Marie malade’ given to the confiture as supplied to Mary Queen of Scots when she felt ill.

Berries:  Strawberries, blackberries, black currants, raspberries etc. all provide flavouring and bases for cordials, jams, tins fruit,  boiled sweets,  etc.

Coffee:  researchers are now starting to say nicer things about this ‘pick you up’.  Choose a top quality Fair Trade packet.

Herbs:  dot the Hamper with lovely smelling cuttings of rosemary, bay leaves, sage, thyme and oregano that can be used fresh, or hung up, dried and stored to add to dishes.

Chocolate:  make sure this is dark and at least 70% (and a bar – not a box!)

Tomato :  any tomato-rich sauce, ketchup, etc. even tins of speciality tomatoes all find favour.  And if someone is a ketchup freak, tell them two tablespoons equal a whole fresh tomato, and only contains around 15 calories.

Garlic :  pop in a clove, and not only do you scare away the devil but if your friend can tolerate the smell (don’t forget some drugs react to this) it is also a very healthy additive to cooking.

Honey :  I’ve mentioned this elsewhere – just make sure it is the best – organic – or manuka honey.

Bottle :  a Christmas Hamper always has to contain a bottle, but be creative. I’ve written about Pixley Cordials elsewhere;  not only do the bottles look festive, but the taste is really ‘fruity’.  They aren’t alcoholic, but can always be the basis of a fruit punch if someone must have something with oomph, but healthy!

Fruit :  and finally dot the hamper with shiny apples, perhaps an avocado, pears and any ‘hard’ long-lasting fruit.

Enjoy with your friend!  And I bet you have as much fun compiling the hamper as your friend will have poring over its contents!

 

 

 

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Winning awards costs money

Another day at work

Gold medalist Victoria Pendleton Wikipedia

Does winning

awards mean

anything ?

 

With the Olympics coming up, we will all be cheering on ‘our’ team to win medals.

Athletes will have trained for years to reach the Games, and thoroughly deserve their awards.

So the average member of the public thinks if something – a product, a website, a service – has won an award, it must be the best – right?

Er- quite possibly not.

If awards are given for sport, it is usually easy to identify the winner.  But when giving awards for projects, this can be subject to what an awarding panel thinks, rather than by those using the service..

I have sat on enough panels awarding stars, gold medals and prizes to know that usually it is the PR company, that produces the best proposal, that wins the prize for their clients;  it’s as simple as that.  When the panel has so many applications to go through, not enough time, and won’t use  the service themselves, they have to judge on ‘PR Puff’, not merit.

Even the National Lottery indulges in these ‘games’.  There was a marvellous charity started by two doctors taking  cuddly animals into hospitals to cheer up sick children.  Desperate for funding to carry on with this service,  they put in for a Lottery grant.

The day they heard that their application had been turned down, the Rolf Harris TV  programme phoned to say they thought their charity was fantastic, and they would like them to appear on the Lottery programme that night.

The charity had to tell them they had been refused.  Why?

Because filling in the pages of paperwork for their application for funding (which meant people behind the charity working long into the night) had been turned down as this wasn’t deemed professional enough.  But the Lottery organisers suggested next time they go to a company specialising in applications (which would cost the charity several thousands of pounds for their fee) to prepare the paperwork.

Pfizer Award

Four years ago the NHS and Macmillan set up the National Cancer Survivorship Initiative website.  This is still ‘in preparation’, and very, very short on useful information, with little except theories to help doctors give informed advice to cancer survivors.  Yet this website has managed to get ‘highly commended’ in the Pfizer Awards.

When patients ask where is information?  Why doesn’t it reflect what patients need?  Why doesn’t the site feature useful content to signpost patients to better care, etc?  They are told the site is for doctors and professionals only.

Whenever anyone asks those tasked with setting up the website, what has happened and why is there no useful information, we are told it is being set up by people with other jobs.  Yet they had time to take off from writing the website to sending in an application for the award – strange.

No wonder our cancer care lags way behind other countries.  And why the French, for instance, will live on average 4.5 years longer after diagnosis that we do (WHO figures). A  look at http://www.ncsi.org.uk, then comparing this with the many superb sites set up by US cancer hospitals, makes a sorry comparison.

NSCI

Pfizer were doing their best, and information about cancer survivorship is badly needed so that patients no longer feel abandoned when they finish hospital treatment.

But the website, supposedly developed to give GPs the tools to help cancer survivors, is long on NHS-speak (when it isn’t copying American English from U.S. website information), but very short on practical information, contacts and other  items that could have steered doctors to where to find advice that would be useful for their patients.

Discussing this at the last Macmillan Voices conference, one survivor commented, “it’s full of pontification but short on practicalities”.

Who is going to read this?

As a patient, if you go looking for information, it is easy to understand why the average GP is unable to provide much practical support.  There is a lot of information on ncsi.org.uk  about patient assessment criteria, but what GP is going to have time to read through all the copy – let alone action it?  It will take all of the average ten minute appointment time just to read one  page, and with only 6 QOFs for looking after cancer patients, will GPs give up their time to read this website out of hours?

What’s needed is factual information in an easy-to-read format which a GP can print out for patients to read at their leisure.  A long, long list of every type of helpline, from charities through the Citizens’ Advice Bureaux, sign posts to informed articles on treatment from joint pain to drug side effects – and to get on with this NOW.

Four years has gone into the setting up of this website.  I am sure Winston Churchill would have had words to describe this patheric effort so far.

It needed patient in-put to find what is useful and desperately needed, rather than Consultants with no experience or knowledge of what is needed, who are ‘cut and pasting’ what looks good to them, without asking those who know.

If the website is going to get any marks, the good old “could try better” best sums it up.

 

 

 

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Christmas appeal for children with cancer in Kenya

What’s going on

                                                                                   in Nairobi

Childhood Cancer Initiative Kenya is appealing for

Christmas donations

 

The appeal is to help purchase a Medical Evacuation Van for Patient-Care Support

Childhood cancer patient-care support is increasingly playing a major role in bridging the huge gap in access to cancer patient-care in low-resource settings.

High rates of cancer-related deaths along with poor outcomes often resulting in lifelong complications among childhood cancer patients, is slowly being checked by a responsive patient-care support service.

Childhood Cancer Initiative Kenya, which pioneered cancer-house services in Kenya as a practical means of lessening the burden of cancer, is presently making an effort to strengthen its patient-care support programme and is appealing for donations to enable it purchase a quick response medical van.

Anyone wishing to donate can contact:

Bank name:             Family Bank Branch: Sonalux House, Moi Avenue, Nairobi
Bank address:             P. O. Box 74145 – 0200 Nairobi, Kenya

Account name:             Childhood Cancer Initiative
Account holder address:     P. O. Box 8811 Nairobi 00300 Kenya.
Account number:         003347616101

SWIFT:                 FABLKENA

Hands across the world

One important aspect of cancer care is the way people around the world make contact,

to share ideas,

discuss treatments

and just talk and let others know they are not alone.

Joseph Omach, Administrator at the Cancer Research & Communications Organization in Nairobi, Kenya emails me to tell me more about the milestones achieved by the Childhood Cancer Initiative!

“It is a great house and parents and children  must have such a relief after covering long distances to Nairobi in search of treatment for their children. Our gratitude to the Love for Children UK for supporting such a worthy cause.

A worthy aspiration shared by many, and especially in Addis Ababa where many children are brought over long distances to access the only cancer treating hospital in Ethiopia” .

Love for Children UK

After a great deal of work with their partner,  Love For Children UK, Joseph says, “we have finally established a cancer-house for childhood cancer patients in Nairobi .

Apart from free accommodation and upkeep for childhood cancer patients, LFC Nairobi Cancer-house is set to provide for basic educational needs as well as psycho-social support to both patients and their families.

While we are working towards the official opening of the facility, the cancer-house is now operational.

 

 

 

 

 

 

 

Childhood Cancer Initiative
Suite 15 , APA Insurance Arcade
Hurlingham Shopping Centre, Nairobi

Tel:  +254 202113807    Mobile : +254 735944238

P. O. Box 8811 – 00300
Nairobi , Kenya .

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