Rattling NHS cages dealing with Cancer Survivorship

image of Verite Reily CollinsDEALING WITH DRUG SIDE EFFECTS                      is a problem for many of us.

Trying to find information, you could go to NHS CHOICES website –

Their suggestion is ‘Contraception’.

Try again – and up comes ‘Suicide’.

Definitely a ‘malfunction’ of the NHS’s £60 Billion IT system, but it could upset patients.  It’s not funny, and is NOT good enough for a publicly-funded Internet  service, dealing with a problem that affects  25% of cancer survivors.

However,contacting professionals to ask if they knew of approved specialist staff who could help with these long term side effects, I got a huge POSITIVE response from Nurses and Cancer Support Centres .

Patients and Cancer Nurses sent comment after comment:

  • good luck! ;
  • much needed!;
  • wish I could get help with…….. ;
  • My GP just thinks I am making this up …..

Complacency is NOT helping us

When NHS, Macmillan, National Audit Office and others admit to some of WORST post-cancer survival rates in Europe, this makes survivors determined to bring our needs out in to the open.  It’s time for Patients to unbutton the stiff upper lip, stop being so uncomplaining, and demand that the NHS copy other countries with better post cancer long term survivor care.  Am sure that will improve survival rates.

Other countries treat long term side effects seriously.  It can’t be rocket science to send a survivor to the right specialist to start with – not waste our time going to doctors who say “I don’t know”.

Finding help – NHS Choices website shows lack of knowledge

Keying in ‘cancer survivorship’ and ‘treatment for cancer drug long term side effects’ produced

  • First go – list offered  ‘suicide‘.
  • Tried again – and up came ‘contraception!’

Gave me a laugh;  but not so funny if you are desperate. This is a poor showing by  NHS’s IT,  so what’s going to happen when Granny goes on Skype for consultations?

I am sure Specialists are there – just need to get better known

The order that after discharge, Patients were no longer under the care of the hospital team treating them, must be one of the stupidest ideas coming out of Dept. Health.  Most GPs have no idea how to deal with our complex problems. And why should they?  They are not specialists.

Due to house moves, have registered at three practices in the past two years, all in the London area, with 10 NHS hospitals in the area treating cancer.  Explained long-term side effects to each new GP, and each time asked if they knew where I could go for help.  NOT ONE referred me to a local hospital who have appointed an NHS specialist in this area, and had informed each practice.  I found him myself; and looking out of his window, could see one of the GP’s surgeries

Macmillan training – what happens to it?

During my moves, phoned Macmillan to ask for list of GPs who had taken their GP training. Was told they don’t have such a list  Why?  The funds for training must come from the money we help raise.  So come on Macmillan;  put us in  touch. so we can go to GPs who understand.

Perhaps someone like the doctor in this cartoon :exercise cartoon

doesn’t mince words, but what he says makes sense.

Not like the doctors who keep on telling me “I don’t know”.

Well, Doctors.  If you don’t know, do as we have to do.  Go on the Internet and search.

Or as one very helpful doctor did;  take a photo of my splitting nails, showed this around at a Conference, and came up with the name of a Consultant who has saved my torn split nails – no painful episodes dressing, shaking hands, etc.

In the meantime

Keep looking on

http://after-cancer.info/2015/01/26/contacts-for-survivorship/

and send me details of any Specialist you come across.  I will then contact their hospital and/or their Secretary, to ask if they mind.  One I was told about said he couldn’t help – his appointments were booked up until December.

verite@greenbee.net

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