If you want to use NHS Choices to comment on your radiotherapy service be aware that there is a character limit of 3000. Easy to exceed this and if you're trying to do a cut and paste job it's a bit of a disaster. The other problem with NHS Choices is that it does not operate like Tripadvisor where you can compare the excellent reviews and terrible reviews.
Found myself sending my mini report to the Care Quality Commision. I hope they value all that I have written and will visit Radiotherapy on their next inspection.
I am left wondering if Radiotherapy was left out of the last CQC inspection because the the guidelines are thought to be working.
When you're looking for a good restaurant in an area you've never been to or don't visit often you'll turn to Tripadvisor or some other such site.
Unfortunately the shock of cancer doesn't give you the chance to suss out hospitals.
You can find out how your hospital is rated by the Care Quality Commission.
Into your search engine put "the name of your hospital - Care Quality Commission".
These inspections probably have reports that are set out very similarly for every hospital.
Look for "Outpatients" and its rating on the very first page.
Click on Outpatients. Mine has the requires improvement rating, which means "the service isn't performing as well as it should and we have told the service how it must improve". Delays in radiology were specifically mentioned. Although it is disappointing to read a rating and comment such as this it does mean that the Care Quality Commission will be looking at Radiology when it visits again.
However, the term radiology takes in diagnostic tests as well as radiotherapy. Regretably on reading the full report the team did not visit the Radiotherapy Department. This is worrying as it might well mean it's left out on the next inspection and forgotten.
Good idea Toulula. Find out if you can ask for morning or afternoon appointments. The good news is that this is often possible.
Make plans. Have people round. Cancer need not be the centre of the universe unless you let it be.
Take care. Thinking of you.xx
Toulula - I found when I had my radiotherapy last year that it really helped me to write all the appointments on one long list and tick them off every day - it was great seeing all the big red ticks snaking their way to the bottom of the list.
I had 20 treatments and at the end of each week, Friday became treat day to celebrate a whole week of treatments completed. I'd meet a friend for coffee and cake, buy myself a posh coffee from the expensive coffee place in the hospital lobby etc. It gave me something little to look forward to and aim for.
Atat - Glad it's all going well so far, keep slathering on the cream and drinking lots of water...
Toulula. Is it possible to combine the treatment visits with something else so everything doesn't feel so hospital bound for you? Are there shops nearby to hospital? This will take more energy, but it might reduce things to the level of visiting the GP and going on somewhere else afterwards.
Their reply is weird, but then you are asking them to judge their very own performance.
When I went into the scanner and had the tatoos it was about 10 - 15 minutes lying down on my back with arms at rest on the board above my head. It wasn't tiring - I was after all lying on my back.
I have not had a mastectomy, but mini breast reduction with lump taken out. (Followed by 6 lots of chemo) I'm no expert so don't know if this makes a difference with the 6 weeks ECAD date you've been given..
Anyway, playing by their rules the ECAD still means Earliest Clinically Appropriate Date for the next treatment to begin. IT DOES NOT MEAN towards the end of the 31 day add-on period.
Keep doing the excersises - don't give them any excuse for further delay.
Want to see how hospitals choose to interpret guidelines?
Put in "Cancer Targets" www.ncin.org.uk
After you've read it you've read it you'll wonder if you've committed a breach that you have no Knowledge of !!!!
If rules are going to be applied then it is only fair that patients should be made aware of them at the very start of their treatment.
I live in the warm and this year sunny South of England.
Take care Atat. Try to relax.
Knowing what I do now. I'd catch the Oncologist's attention before he put pen to paper and ask what date he intended to put down as the ECAD date. If hospitals are going to interpret the ECAD date as the point when they can add 31 days on then it makes sense to press for the earliest ECAD date possible. Playing by their rules that is the obvious loophole.
ECAD - Earliest Clinically Appropriate Date. For radiotherapy that means the first date the patient would have been physically fit to start radiotherapy. From www.datadictionary.nhs.uk
Would should happen? Try "Ensuring Better Treatment: Going Further on Cancer Waits" at www.ncsi.org.uk
Here you'll find on Page 7 that there is no 31 days add on to the ECAD date. The subsequent treatment is all within 31 days.
Atat. As you say these are only guidelines and that will be quoted at you. Your experience has been horrible. What can be done?
Well the next General Election is scheduled for May 2015. I have largely given up voting, but this time I will. Any unfortunate politico touting for my vote at the door will be asked what they know about 31 days, ECAD and decision to treat. No knowledge from them - no vote for them.
Kill those stray cells as fast as possible, I say, and that is as soon as possible after the ECAD date no messing about.
Sounds as if Northampton General is OK. I have my follow up appointment next Thursday, so expect an oncology appt soon. Must admit I shall be glad to get it all over. The op was nothing to worry about, and the care on Spencer was first class, even for us day patients. Can't fault them.
Obviously hospitals vary a lot on waiting times but I had my rads planning appointment 8 weeks after my op and then waited two weeks to start radiotherapy,
At the planning meeting they gave me all the dates and times - so I started rads 10 weeks after my op.
Sorry to read of the wait you're had and that you are so upset. Think you are quite normal !!!
The radiotherapy department I visited at the beginning of August was very quiet. Think things will improve towards the end of August when staff who are parents are back from their holidays and getting ready for the return to school. Hopefully more radiotherapy machines will be up and running to kill any stray cancer cells.
I'm afraid I wasn't told the date of the actual radiotherapy treatment until the end of the talk of what radiotherapy was about.
Unfortunately the availability of radiotherapy is such that there are priority categories. Put "The timely delivery of radical radiotherapy by the Royal College of Radiologists" in your search engine. I am no expert but from what I read Breast Cancer is Category 2. This is good and bad news. Good that Breast Cancer is described as a slower growing tumour type. The bad news - you wait on.
Hopefully you won't wait so long from the Planning Session to actual treatment and you can get on with your life after that vital treatment is carried out.
You may wonder why the Planning Session happened so far in advance of actual radiotherapy. Easy. It has prevented me hunting down another hospital with a shorter waiting list. How can I go else where when the tatoos and cat scan have been done? I wasn't even told there was any possibility of temporary tatoo marking just asked if I was ok with the permanent tatoos.
I am not looking forward to turning up to the radiotherapy at this hospital in any way. I thought I'd be pleased to get the whole thing over and done with, but I've lost confidence in the place. Lack of vital info. Figure fudging.
On this site somewhere it states:
"Radiotherapy 31 days after chemotherapy has finished".
Does that mean 31 days after your last chemo was given.
Does it mean 31 days after your ECAP date - the date your Consultant states that you are fit for treatment, which will probably be about 10 days after the chemo was given. 31 added to ECAP makes at least 41 days from chemo being given.
Now here is a really silly question. What does treatment mean? Is a Planning Session regarded as treatment despite no radiotherapy being given. So the patient can go into a Planning Session and then wait on hopefully for not too long.
The first actual treatment appointment I got was 39 days after the chemo to kill off the stray cells. After a moan this was reduced to 34 days (why couldn't I have got the earlier appointment in the first place?) The reason for the delay was that Planning takes a long time. The word CAT means Computerised Axial Tomography - note carefully the word computer.
What's in days you may ask. The Planning Session happened 17 days after the last chemo. Meaning I have been CAT scanned and marked up with tatooes another17 days before I'm going to get the actual treatment. I asked, as an after thought when I got the second appointment, if I could diet. No. Putting off dieting may not seem a problem, but as I now have the joy of being mobile after chemo the weight started to fall off without any change of diet at all (3lbs in 5 days). Like a lot of women, the very first place the weight falls off is - the breasts!!!! Also like a lot of women extra weight does not help dodgy knees.
So I'm now forced to feed myself like a pate de fois gras duck or risk those measurements being way out. There is no way I'm going to let some figure fudging bod in an office risk damaging my heart and lungs with radiation because the planning session data will have become out of date.
I won't be able to sort this situation for myself, but hopefully other women will be told at the very least not to diet.
I look forward to the radiation finishing, any stray cells being killed off, and getting some life back before the ovaries are removed in a few months time. My first op was at the end of Feb. Freeedom!!!!!!
i had my wle on 29th Jauary, saw the oncologist on 19th March and started my Radiotherapy on 3rd April. That was 9 weeks from the surgery to starting Radiotherapy I did phone to chase things up. All hospitals are different and ladies can have infections etc which delays the start of the Radiotherapy. I was treated at Northampton General. Hope your hear soon it is all a waiting game, but once it starts it flies by.
I had to wait 14 weeks for my radiotherapy to start. Like you I was really concerned about the long wait. When I voiced my concerns to my oncologist he assured me it wouldn't make a difference to my outcome. Part of the reason for my delay was due to first, allowing healing time from second lot of surgery as margins weren't clear the first time and then the Easter holidays as the hospital I went to have a break over Easter and they didn't want my treatment to be interrupted.
Some hospitals seem to have problems as they are so busy. I went to The Churchill in Oxford and they cover a very wide area which also adds to the pressure of fitting everyone in I suppose. Also some unlucky ladies unfortunately develop infections after their surgery and can't start until everything has healed.
You could always ring the radiotherapy department to ask them to give you some indication of when you'll start. I hope you hear soon.
Atat, if there are other hospitals in the area, it might be a good idea to try to have your treatment there. However, many of the ladies who had radiotherapy when I had mine were extremely tired by the journey each weekday - some up to an hour each way, as well as having burns. I was very lucky as I live just a few minutes away from our local hospital, plus I didn't burn, just some redness, which I put aloe vera gel on several times daily. Gentle hugs and good luck, Jo x