[duskParticipant]

Jeffrey and Alex,

We and all patients denied treatments that are available have every right to be upset, angry, depressed according to their psychological makeup. I too have written to my Labour MP, a young inexperienced thing who took over from a well known high profile self promoting one. The latter wanted my vote but failed to do anything when help was sought, because it meant challenging a system of which the MP is a part.

I think a campaign to improve access to any treatment and care in the NHS is needed. If we campaign only for our corner it means others will also do the same so we compete for the same resources with another cancer  or illness group. I for one am deeply distressed how taxation revenue is used by our politicians and how health inequalities have been increasing. If one has people in power who are not truly our servants I feel the wider interests of citizens gets ignored.

Although it is good we have M UK  taking action behind the scenes I am not sure it will be enough in this difficult climate. Anything we as patients can find the energy to do ourselves is important too, so good Alex that you are doing what you can.

[jeff605Participant]

Dusk, I think you are right about a campaign across all the
Cancer groups , it would be that more a powerful representation. I would suggest a petition similar to those set up by 38 Degrees, which have wide veiwing on the internet.( Ive signed several). These attract attention from those not directly involved too. Unfortunately due to family pressure mainly my middle daughter who had a stroke last year and is taking a lot of my time up visiting, etc., added to my lack of energy and strength in the mornings – a new side effect that has crept in – I couldn’t give it the time and effort required. Any volunteers out there?
Alex, I am in the same position, up now, but pretty nacked. So soon be going like a train for two days, by Friday will be right down and wondering why I’m bothering! Then I suddenly remember its just the steriod effect . Good fun or what !!

[dickbParticipant]

Sorry Jeff, if your talking about the MP for Rutland and Melton, don’t hold your breath and I speak from personal experience. He will not do anything to upset his mates, I believe he also has one of the worst records for attending debates in the House. Remember the protests against David Wilson Homes building on Dalby Airfield? He couldn’t even be asked to turn up to one of the meetings, sent his side kick who got a blasting on his behalf. Could we not look at possibly doing an online government petition. If I remember rightly if there are enough registered than it has to be debated in Parliament

[alexplypinParticipant]

I have arranged to go to my 1st Myeloma UK meeting on Monday, at Bury. The groups that I have already joined include those more local, with all kinds of cancers, although the similarity in experiences is amazing. The only thing upon which we cannot pass comment is radiotherapy.

As Monday is my heavy chemo day, and next Monday is my Cycle Review and Zometa day, it will be a struggle – but, hopefully, worth the effort. The campaign against the CDF decision has to be on behalf of all those affected by the treatments to be withdrawn. I am a 38 Degrees member as well, and have campaigned strongly against TTIP on their behalf. My frequent visits to surgeries, clinics, and patient groups have meant that I have got the message out to many people who were previously unaware of this iniquity. It would not be a huge stretch to tag our protest as a living example of the potential implications.

 

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