Fingers crossed that PALS intervention will straighten things out.
For me, it’s the potential damage that the delays have caused my health. Increase in lesion size and risk of spreading.
Even if things haven’t got that much worse it’s not the point. It is also affecting my mental health, my time spent dealing with this rather than enjoying life.
So a simple apology from the NHS and being compassionate just doesn’t cut it.
So I may have to start a legal case. The ball is in motion and this is the start with PALS. Let’s see where this action takes things.
PALSis an nhs service.
Yes, but you are advised to go through them before making a complaint. If necessary I will go through PALS, make a complaint to NHS and take legal action. You can also make complaint externally.
But to start with will see what PALS can do.
Obviously if I wanted financial compensation then I would need a solicitor.
It was just that you mentioned a legal case. Concentrate on getting the treatment first and hopefully PALS can help with this.
Exectly, let’s see what happens with PALS and getting these ops sorted out first.
Mine is just for MRI and CT scans but everything seems disjointed, especially where different hospitals are dealing with the referrals. Some things end up as messages on the NHS app and some with physical letters, some both. Automated telephone calls and reply systems are further sources of confusion. There are lots of good people doing their jobs but coordination and consistency re processes / records seems a problem.
Having worked in the public sector, I’d say it is not a problem which affects only the NHS.
It frustrates me, but it must be very stressful for you. Hopefully they can pull out all of the stops to get you through the system quickly now. Fingers crossed for some progress!
What a f#cking disgrace. I’m always telling my American friends how great the NHS is, despite its obvious troubles, but this is indefensible.
So sorry to hear of these latest frustrations Dan, I really don’t know what to say.
Communication is key, and chopping and changing things last minute even if there are genuine logistical reasons to do so will never sit well with anyone.
Were you ever assigned a cancer nurse specialist who’s also involved with all the case meetings? They are often more accessible/contactable than the medical teams/surgeons and can also listen to your frustrations/concerns and will act as an advocate for you concerns from within the ‘team’ if that makes sense.
I’m really saying use all contacts at your disposal if you haven’t, and while I’m sure you’ll be polite with the oncologist make sure you express all your concerns and frustrations quite frankly.
This probably doesn’t help much, but without proper communication and explanation of changes to plans you felt were definite and positive I think anyone would feel immense frustration at this point.
I have done everything @Alley_Cat. Constantly phoned colorectal nurses and sent emails. Everything and I have pretty much explained that. They don’t answer questions honestly or transparently. They use phrases like sorry and show compassion and empathy. But don’t answer the key questions. And I don’t think they are fully in the loop or on the case either. It’s a culture. It’s the core that is the problem.
You can’t just pick up the phone and speak to someone. And when you email they don’t reply half the time.
It’s passed onto PALS and I have appointments and an updated plan. Just need to make sure it stays on track.
Dan it seems as if there’s way too many people involved, you should just one point of contact. Hope they pull their fingers out and there’s some action.
Here you’re assigned a cancer coordinator and it’s their responsibility to coordinate your treatment and care for all your needs.
They should understand the importance and the stress and anxiety they are causing.
We’re all thinking of you, hope something happens soon. Take care and stay strong.
That is down to them to organise a one point coordinator. It’s not down to me. My understanding is, it is the responsibility of the Oncologist consultant who is in charge of my plan.
The colorectal nurses are first point of contact. But system does not work. As there are different nurses at two different hospitals. If you phone them, they don’t answer. And then they phone you back sometimes after 48 yours, or not at all. You send an email and then they don’t reply. You ask questions on email. They don’t answer them.
This is what I am up against.
It’s not straight forward at all.
Things are happening. I have appointments and things are being organised.
The point is they have made massive blunders. They are rebooking the ops.
My issue is they have created delays by not joining up and liaising properly, resulting in a cancelled operation.
I need them to explain why it has taken 6 months before I have an op after chemo. And to be open and transparent about it.
Dan when I was laying in hospital feeling like sht after 5 straight days of chemo I kept thinking of how strong you’ve been, I used some of your posts to draw strength from. I’m now hoping I can repay you, I wish there was something I could do.
So look guys I am strong as an ox mentally and physically.
They have made a mess of things and they need to put things right.
I am beating cancer regardless of these delays. Know that! I am just putting a rocket straight up them!
Ops are in progress. I will speak to oncologist on tuesday. And they will hear me.
Done the PALS thing too, so it will be monitored. I don’t take stuff lying down.
And I appreciate the advice on here about PALS and urging me to take action. We are all Superstars! Thank you all.
Love,
SuperDan.
Xxxx
Your support really counts Pete. We are beating this my friend!
We can do anything! We will stay strong together. Brothers in Arms!
You and Pete and everyone else fighting this awful disease certainly are. Keep at it, all the rest of us are with you in spirit.
Listening to Houses of Holy on LP12, cleaning some records in conservatory at same time. Keep spinning the records.
I am alive and doing good! I’m putting this in perspective. I have to continue to live. Yeah sure deal with these things. But life is for living! Not gonna waste unnecessary time on NHS mistakes.
I had my 39th (and final) blast of radiation therapy on Monday, and, yes, to my surprise there was a bell to ring. Back to the doc in a month to see whether it all worked.
Thanks and much love to Dan, Pete and many others here fighting the good fight. You are all a source of strength, encouragement and inspiration.