MY LAST scan results show cancer in my bones, together with a tumour in a rib, so I am hoping this can be removed.

It would also be good to have the opportunity to discuss treatment with one of the new targeted radiotherapy methods, such as Cyberknife, but these options are seldom considered for NHS cancer patients as most of us do not have private health insurance.

We have a two-tier system, thus being denied the chance of the best outcomes.

Nevertheless, I still hope for a referral, as my cancer continues to grow. I am to have more radiotherapy treatment to my pelvis to see if it will reduce the pain.

Our government still wrongly maintains that NHS treatment is free at the point of delivery which has clearly not been the case for me and for many others.

The NHS should be fully funded out of taxation, yet we still suffer from the complex problem of so-called “health tourists” which has yet to be tackled, as recently reported in the media. We need more effective leadership, smarter procurement, with less waste, and less reliance on expensive temporary staff.

This would release more funds and improve patient outcomes. We are one of the richest countries in the world but with so much less of our GDP being spent on health than other members of the EU. This has to change.

As well as living with cancer, patients and their families cannot relax as we have to stay alert to the ever changing budgetary threats and constraints, which limit access to treatments. We are again faced with more challenges, both of which refer to old issues and broken promises, that we thought had been agreed by NHS England and our Conservative government.

1 Cancer patients have once again been left in the dark as it has been reported that following discussions, held behind closed doors, another 10,000 patients face losing drugs, so soon after the last round of drug cuts, thus reducing access to the life extending Cancer Drugs Fund (CDF) which was promised until April 2016.

Whatever happened to the much-advertised NHS mantra “No decisions about you without you”? No details are yet announced of a sustainable replacement fund.

It appears that despite all the anticipation of an improved NHS culture, little has really changed with continuation of the charade that patients remain important. The CDF was introduced by the prime minister as NICE were turning down too many cancer drugs and taking too long to assess them, leading to early deaths. So we may soon return to the same sorry state we were in before. It may take another march to London for effective drugs, as we did in 2008 when NICE did a U-turn and eventually gave us access to Sutent, having told me that it only gave us a few extra months, whereas many have survived for several years. It has given me four years of good quality life! Whilst it was good to see our PM confirming that the CDF he introduced had saved lives, I would remind him again of his earlier promises re the CDF that it was meant to last until 1/4/16. In the absence of anything other than NHS secret meetings, cancer patients may soon find ourselves where we were in 2008 – a retrograde step!

2 Secondly, cancer patients have now been asked to respond to a national consultation about the future use of the much-needed Stereotactic Radiosurgery (SRS) or Gamma Knife, which has given me another five years after treating my brain tumours. Whilst it’s good to ask for patient involvement, a small part of me wonders if we are to lose this treatment as well, which will be a double whammy. You will remember that such a facility was cancelled in Oxford at the very last minute with no explanation thought necessary!

It’s high time that health leaders together with government address health issues to ensure that patients are put first rather than highly paid administrators and expensive temporary staff which the NHS cannot seem to do without due to a lack of trained staff and the continued amount of waste in hospital procurement and fraud which was reported at some £5bn last year.

I am a member of our own self-funded kidney cancer support group which totals over 450 patients and carers, suffering with this life-threatening disease, and many feel as I do with regard to the lack of real support. Many of us believe that if we fail to challenge decisions then even more will die, before we have had a chance to try the many new treatments and drugs now emerging. We have to keep putting pressure on the powers that be to maintain our treatment options before they are withdrawn.