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To ask for your help understanding nhs guidelines for cancer treatments.

(7 Posts)
Dontbesilly Sun 09-Aug-15 14:56:34

I posted this also in the life limiting illness section too. Apologies if this is technically not the right place for this question, but there is more traffic here.

Basically if someone went to hospital for a scan on 19th June and cancer was confirmed they then had more scans of different types over the next 7 weeks with each scan showing a larger area of cancer and we're promised aggressive chemotherapy and radiotherapy, can anyone tell me when the promised chemotherapy and radiotherapy should start. Obviously the patient went to the gp before the 19th June. Just the guidelines suggest that from the hospital first receiving the urgent gp referral to treatment starting is 8 weeks. It's 8 weeks this Friday since the first scan. The cancer is aggressive and I can't understand why the hospital are bloody fannying around.

Was thinking of using the guidelines once I fully understand them to force treatment. while the patient is well and up for anything. I feel pissed off, furious and helpless in equal measure. Sorry for the rant.

Any advice would be really fantastic!

AliceInUnderpants Sun 09-Aug-15 15:00:35

Based on what you've said, the treatment should start 8 weeks from when the cancer was identified, so am guessing 8 weeks from the 19th June - which is 14th August. Have you chased it up? If they are still doing exploratory procedures, I'm thinking that would possibly delay treatment starting though.

TenForward82 Sun 09-Aug-15 15:03:40

I have recent experience of this - mum waited a month. Totally understand your frustration, don't know why they can't start right away.

Our experience was that it was not a smooth process throughout. I had to do a lot of chasing to make sure drugs and appointments were given / set when they were supposed to be. Good luck, OP, you can get through this!

Dontbesilly Sun 09-Aug-15 15:24:28

Thank you both!!!

Alice - I thought 14th same as you. We are not aware of any further tests. Each scan shows up the cancer spreading further and aggressive treatment is promised but no start date yet. So I am freaking out that it will be too late as we were given 12 months life expectancy but two have been wasted in my opinion.

Ten - so sorry about your mum and the chasing up you had to do. It's not fair is it? It's so frustrating to have to push for urgent treatment. I must be naive thinking that certain illnesses know sodding urgent!!! Sorry to rant but families have enough to deal with as it is without having to double check them and remind them and make a nuisance of ourselves.

Then you meet people who are sooooo nice and helpful, compassionate and professional, reliable and caring too. It's not all bad I know but the frustration is crazy. Thanks for your kind words too and hoping your mum's treatment goes very well.

TenForward82 Sun 09-Aug-15 15:30:33

What I found so frustrating is that there must be literally thousands of patients going through the exact same treatment schedule, appointments, drugs, the works. Yet they act like they've never done this before. So my advice (without trying to be too cynical or make you dread the process), would be to write down everything and make sure you follow up where necessary. We had huge problems with chemo drugs being late (like 4 hours late), and drugs (given in order to manage bad reactions to the chemo) were not prescribed when they should have been (resulting in more delays from the pharmacy). At one point they even ran out of pillows for my mum to rest her arm on during chemo, and we had to use my rolled up jacket! And when the pillows came back from the laundry, I had to chase 2 nurses to get one ... just, ugh, very very frustrating. Lots of 'minor' stuff that added up to make the process more difficult. Had to watch everything like a hawk.

Smudgeandpudge Sun 09-Aug-15 15:51:14

Agree with chase, chase, chasing. I'm undergoing cancer treatment and in many areas it really is a case of you don't ask, you don't get unfortunately. I hope you get it sorted soon.

Dontbesilly Sun 09-Aug-15 16:33:51

Ten - I know you say 'minor' stuff but it all impacts adding to an already stressful situation. Yes to feeling like like they have never done it before. I just wish that if they treat cancer patients and those with serious illness as if they were their own flesh and blood, or at least as a person who is in dire bloody need of medical treatment then it's a start. I know that the nhs is facing a difficult time but having drugs ready for the patient and a simple pillow for comfort is not asking for a lot. It's just demonstrstes that they are important and recognised as a patient. Glad you were there with a temporary solution with your jacket but there are some without this support. It's heartbreaking. I see more compassion and urgency from car drivers pulling over for a blue light and siren blaring ambulance to pass by than I am experiencing. I have even contacted my mp saying can you help us get chemo please we have been waiting for two months almost. I will probably turn up unannounced to the oncology department and refuse to leave without a chemotherapy treatment start date. It's insane. Really hoping that your mum's treatment goes well and smoothly. Thanks for the advice too and I will write everything down.

Smudge - so sorry to hear that your going through this too. I will be chasing them up. It's sad to hear that you have had to chase things up too. I really hope that things get better for you and your treatment goes to plan.

I know that on the whole the nhs is amazing and so fantastic and employs the most amazing and dedicated professionals. The staff probably feel just as frustrated. I would just like to ask David Cameron when we can start treatment bearing in mind we have a been told we have twelve months to live. The precious time we have left is being wasted waiting around and battling to get treatment. It's wrong! angry

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