Many GPs are still unclear what is available for survivors – and reluctant to refer

Recent NHS cuts mean loss of services for cancer patients such as Lymphoedema treatment, etc. Time between check-ups is being extended – and the NHS hopes we won’t notice

  • and how many times are you receiving a letter ‘re-scheduling’ an appointment?  Crafty way of extending time.

Cancer Survivors with long term conditions are having to talk GPs through what they need

When the Dept. Health had the brilliant idea to devolve post-cancer treatment from hospitals  where patients had been treated, and hand it over to patient’s GP, I was at a major meeting organised by a cancer charity, where doctors warned most did not have expertise, and it wouldn’t work.

If you experience problems with a GP who is not happy about having to become an overnight expert in cancer care (and who can blame them?). it can be helpful if you produce print-outs from US cancer websites; to show GPs an official explanation of what we know we need.

We don’t seem to have the user-friendly content on our websites that the Americans produce so successfully, but their clarity can often make it easier for a GP to understand our complex issues.

If you GP can’t or doesn’t understand what you are going through, it can help to produce something written in ‘clinical’ language.  As a start, go to this page below, and take this to them, for help with Surviving.

Dana-Farber Cancer Institute: Primary campus

Dana-Farber Cancer Institute: Primary campus

Or if you suspect a nasty condition might be caused by long term side effects from cancer drugs, see many listed on

These pages come from the websitea of two top US cancer hospitals, and are useful to refer to if your GP or health professional tries to skirt around the issues.  Our follow-up care, in comparison to that offered in other countries, sees us at the bottom of the European table.  e.g. On the Royal Marsden website, I couldn’t find a SEARCH button, let alone helpful videos!  Wake up in Britain!  To be fair, British charities such as Macmillan are good at helping with financial oroblems,, but in comparion to the U.S. sites, mentioned under Contacts Category, this is what Britain produces


In the NHS’s defense, we don’t pay enough to fund a health service as good as France, Germany and other countries. Many countries pay more in taxes that we do – but not that much more. But in UK we have to search around for information – that is difficult to find.  If only the Marsden and other hospitals could ask an IT savvy member of their Friends to develop user-friendly website content.  Surely it can’t be that difficult?  Or is the contrast more because the Americans involve patients – in Britain we say “you are ONLY a patient”  (quote from a Marsden nurse to me) and don’t consult us, the patient.


Is surely the first organisation one turns to;  they have produced extensive reports listing all the problems we experience.  Yet nowhere, in the pages and pages of bumf, is there one helpful piece of advice for those with major long term side effects, only basic info.  Basic info listing what these side effects are.  In comparison with US websites, this is pathetic, and only goes to prove why our survivorship rates are some of worst in Europe.

In contrast, I emailed Livestrong, the US cancer charity, for info on a survivorship issue.  Within half an hour back came a long list of helpful info, web addresses etc., and an invitation to stay in touch if they could help more. Click around their website, and see how colourful and user-friendly they can be.

So far, Macmillan sent me these addresses:

Current situation

With the dire straights that the NHS is reduced to with cuts everywhere, Patients are going to have to be much more clued up, which means seeking out our own information.  In the 10 mins allocated to your GP appointment, it is unrealistic to expect them to have time to research the complex problems we survivors have, so we have to find our own info.  If you find the user-friendly content of US cancer hospital websites helpful, there is a list of top ones in the Contacts category in the right column.

But don’t get fobbed off – my Oncologist had a good look at my medical history, and tried to blame my side effects on everything BUT hormonal drugs.  I ended up wasting time of Consultants in other fields, all of whom had to send me for extensive (and no doubt expensive) tests – until it became obvious that my problems were caused by cancer drugs – and US websites at least proved that I wasn’t a ‘malade imaginaire’ .

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