Cancer Survivors need to look after themselves 

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

The Prime Minister’s promise of funding for the NHS is short on detail. Nick Robinson (cancer survivor and BBC presenter), plus an eminent panel gathered to pontificate in the BBC’s recent programme on the NHS, couldn’t see anything changing – let alone improving.

This week I phoned to ask why I was still waiting for an appointment six months on – only to be  “you have anappointment booked for this afternoon”. Trying to find out who booked this mythical appointment, I came up against a brick wall.  When it makes a mistake, the NHS needs to be more accountable to patients.  If something goes wrong, then the NHS needs to sort out the problem.  Instead, there is a shrug of the shoulders and the ‘next appointment’ is offered – often a long way off. A lot is needed to change, and the NS must realise when it makes mistakes it is up to the Service to sort this out – not leave the patient with a long wait through no fault of their own.

So, it’s time to take your care into your own hands.  Making sure you get the best, it’s up to you

Getting an appointment

  1.  Always check your appointments.  It’s a good idea to phone a couple of days beforehand, as they can be changed and you aren’t notified.   Expect an apology?  You must be joking!
  2. When you are choosing where you might receive treatment, always research individual hospitals’ waiting times. You can do this by using the NHS e-Referral Service (the information comes up in a drop down menu called ‘Services Near You’) or by checking hospital websites – many update their waiting times at least weekly and it can be a good way to see which hospital has the capacity to see you sooner. Your access to the NHS e-Referral Service will be given to you by your GP.3. The waiting period starts from when the hospital of your choice receives your referral letter, or when the first appointment is booked via the NHS e-Referral Service. So the sooner you choose where to be treated, the sooner your surgery should be booked.

    4. NHS patients have the right to choose where they receive NHS treatment. You will be offered a number of suitable options by your GP, referring clinician or the NHS e-Referral Service. You can do your own research and suggest your preference to your GP too. A good track record on waiting times should play an important role in how you make your decision if you want to be treated as soon as possible. Always remember that it is your right to choose where you receive your NHS treatment. You can find more information about patient choice here: http://www.careukhealthcare.com/patient-choice

5. If you are waiting overlong, ask if there has been a cancellation.  Staff are too busy to phone – you have to ask.

6. Be prepared to ask to go to another hospital.  This can often get you moving up the ladder

7.  If it’s a service that’s provided by a private provider, contracted by the NHS,  and they keep you waiting, threaten to go private.  They don’t want to lose your fee so this can result in them suddenly ‘finding’ a convenient appointment.

NHS is always pleading poverty, and 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, often they won’t even give out the information.

Not helpful.

Moving to a new area, I do find that the surgery where I am registered is helpful.  If a GP says I need something done, they will tell me how long is the wait – I make a ‘face’ – and they’ll tell me where I can get an appointment privately.  So at least I know I am going to a reputable provider.

Meanwhile Dept Health peddles Pie in the Sky

Current pronouncements in the media promising us the earth, if you read those ‘clinicians wot knows’, the funding just isn’t there.  Twenty billion may sound a lot to you and I, but today’s medical machinery is expensive.

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“.  Yet as Nick Robinson and his panel of health experts pointed out on the BBC programme, our survival rates are still worse.   WHO says we have dropped to 25th in the European league of cancer survivor rates !!!  And around 45th in the world – so much for the NHS being “the envy of the world”.

How to find help

  • Read sensible websites (see panel on right)
  • Go on Internet, check with hospitals near you how long are waiting lists.
  • If you find one with shorter waiting times, you have right to ask your GP to book you there.

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 I was lucky enough to meet up with Mary 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 make sure you 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.  When 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. The NHS will pay for new stockings monthly for me, but not M.L.D.a

Hair; Again, Dr. Fenton came up with the solution when my scalp started itching unbearably.  This time it was Synalar Cream, with a handy nozzle that means you can by-pass your hair-set and apply directly to the scalp.

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 in certain areas.  .

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, you might like to know you are not alone.

According to Macmillan’s report (Cured – but at what cost) 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 have to do for 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 patient-focussed they can be. Most have informative videos spoken in  patient-friendly language, lasting 2 – 3 minutes. 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

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.  (See category in column on right). 

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 should 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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