Cancer Survivors have to self-help to get best post cancer care

 Insurance

Not only does UK have poorest European cancer survival rate (WHO statistics) – but 

Reading the Manifestos. all parties pay lip service to tackling the NHS’s problems, but realistically I can’t see anything changing after the election, except for the worse.  An enormous amount would be needed just to bring us up to the equivalent of the middle range of European care, and the dosh isn’t there.

 So, it’s time to take your care into your own hands.  All parties have plans for the NHS to help cancer survivors – in the distant future   But if you need better care now, it’s up to you.

NHS is always pleading poverty, so one wonders if providing nothing is a way of saving money? Survivors often have to rely for information on cancer charity Helplines, (funded by us – not the NHS); these can only suggest what is on offer on the NHS, and if what you need can only be provided in the private sector, they won’t even give out the information.  Not helpful, especially compared with what Europeans are offered.

Meanwhile Dept Health peddles Pie in the Sky

In 2012, the Department announced  “In 2014, we want to match the average cancer survival rate in Europe to save an extra 5,000 lives every year“. This was Tory-think, but not much different from what Labour promised, yet our survival rates are getting worse compared with the rest of the world.   As WHO says we have dropped to 25th in the European league of cancer survivor rates !!!  

How to find help

Cancer support centres can give you much-needed TLC, but it can be difficult to find staff who have experience of long-term survival issues. But there are some – and eventually, I was lucky enough to meet up with Pamela, at my local Maggie’s Centre. She listened, made some practical suggestions, and came up with some new ideas which helped enormously.  So keep on asking and if a local centre can’t help, ask another.

If you want to live to a ripe old age after cancer treatment it’s up to you to fight for what you need.

WARNING! I AM NOT MEDICALLY QUALIFIED, so ask advice from your CSN, GP etc.

These are Contacts below who helped me.  I am sure there are many others – it’s just a case of asking, asking, asking.:

What’s available in Britain

For Heart Problems caused by side effects of cancer drugs, working at LyonThe Royal Brompton Hospital is Dr. Alexander Lyon whose specialist interest this is.  I consulted him, after heart problems caused by Aromatase Inhibitors. things moved fast.

November we talked about problems cancer drugs cause the heart, and what had happened to mine.  Another appointment two weeks later with him and his team, mapped out a plan of tests, stretching into January, when I had another appointment, and now things are getting sorted.

High Blood Pressure:  US research has discovered that this often caused by drug side effects.  One result of Dr. Lyon’s investigations is results of a 24 hour test, which I can now take to a doctor – WHEN I find someone who understands this.

Lymphoedemia – Stockings and other treatment didn’t work for me, but M.L.D. did, so the British Lymphoedema Society recommended Sossi Yerrisian.  £80 an hour for bi-monthly MLD treatments with her,  which zapped the problem. But the NHS will pay for new stockings monthly for me, but not M.L.D.

Nails: I really felt a fool, but getting dressed, when your split nails catch in everything, is painful.  And as for shaking hands ……!  After years of embarrassed complaining, and feeling doctors thought I was making a fuss over nothing, someone at La Roche Posay told me to go to Dr David Fenton. Working in Harley Street, he also does NHS work at Guys and St. Thomas.  After trying several products, he put me on Solvazinc zinc tablets (obtainable on prescription).  My nails are now split-free, and have even grown enough that I sometimes have to file them!

Skin Problems: side effect of drugs can produce itchy skin,  Flexitol make a Skin Balm and Heel Balm (for feet) both of which are obtainable on prescription.

There are medics with an interest in this subject, but I hesitate to recommend them as they are SWAMPED.  But if there is one who has room for new patients, or a hospital that welcomes new patients, let me know at verite@greenbee.net.

GPs – is yours helpful?

After treatment finishes in hospital, we are told we will now be cared for by our GP.  Some GPs regard us with dismay, seeing us as a drain on their budgets.  If you have problems, consolation is you are not alone.

No wonder National Audit Office, Macmillan, WHO, OECD etc say the UK has some of worst post-cancer survival rates in Europe.  About 25% of survivors have major medical problems with long term side effects from drugs; these can appear years after treatment ends. If GPs can’t or won’t help, it’s something we must do ourselves.  If you have enough funds, you can go abroad, where specialist doctors deal better with survivorship issues.

Don’t be put off by GP sneers over “Dr. Google”, just go on overseas websites, particularly those in US, and marvel at how our cancer main hospital puts up videos showing off Celeb fundraising parties – the Americans focus on clear, informative and interesting videos giving us accurate and useful information

Contacts I have found on Internet

Most cancer types have their own line dedicated to a particular cancer, but there is nothing to stop you looking, or asking for help for general problems.  Some well-known Helplines are :

  1. Breakthrough Breast Cancer
  2. Breast Cancer Care
  3. Prostate Cancer (has a useful Forum with chat about drugs and side effects)
  4. Jo’s Trust (Cervical Cancer)
  5. Macmillan
  6. Maggie Centres
  7. The Haven
  8. Cancer Research UK CRUK

N.B These all offer excellent help, but because some are geared towards offering NHS approved advice, you may find more up-to-date information if you try American websites.

And don’t expect any Helpline Advisor to point you towards any treatment option abroad, if we can’t handle it in UK.  For some reason the British system doesn’t look further than our shores – and doesn’t acknowledge that sharing knowledge could be the way forward.   Or least suggest good official websites abroad.

American websites

Britain may have set up the World Wide Web – but boy, the Americans are showing us how to use it for the benefit of cancer survivors.

I visit the sites below regularly.  They are run either by the US Government, famous cancer hospitals or American Cancer charities.  What I like about them is their frequent use of short, informative and easy-to-understand videos.

ASCO – American Society of Clinical Oncology

Cancer.net

Try these links:  http://www.cancer.gov/cancertopics/types/breast/beyond-cancer-video

Memorial Sloan Kettering Cancer Hospital

MD Anderson Cancer Center

Mayo Clinic

Dana-Farber/Brigham and Women’s Cancer Center

Johns Hopkins Hospital

University of Washington Medical Center

Massachusetts General Hospital

UCSF Medical Center

UCLA Medical Center

Stanford Hospital and Clinics

Livestrong

Susan G. Komen for the Cure

And good luck!

CONTACT ME if I can help with more info

verite@greenbee.net

020 7584 4555

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