Hi
I today had my telephone consultation ,after being advised I had been downgraded to general ENT patient.My cancer consultant was most apologetic at the way i had been treated ,she went on then to thank me for contacting my Macmillan nurse and P A L S .Like she said without complaints being put in writing hospitals can’t take it further ,now I have made it possible for other head and neck cancer patients to be put back into the correct clinics,at my trust.I am waiting for the investigation to be completed to know who and why this happened, that’s if I ever do hear anything.
Anyway she was happy with my progress, 63 year old and cycled 64 km yesterday impressed her!I have been promised my next appointment will be December -January and will be a Face to face ,my last one was February this year and she said no head and neck patient should in the 5 year period go that long without being seen covid19 or not. She said the consultant s are ready and waiting to see patients and are scoping as normal with a few added precautions.So,please do not think i the N H S isn’t working for cancer patients it’s is..
Hazel x
Hi RadioactiveRaz welcome to the forum. Thank you so much for sharing your story about how important it is for people to complain and to not be frightened to do that. Hope the outcome gives you some answers and thank you again for sharing your own story as this helps others enormously. x
I remember my consultant telling me to complain in writing as I was kept waiting for surgery, he said he would love to do more operations, etc but is only allowed to do a certain quota but if people put in a complaint it would help him to get more surgery time. Sometimes we blame the consultants etc but a lot of the time it's "the management" that can cause issues. So pleased things are ok for you Hazel, hope all is ok over there, best wishes my friend, take care.
Chris xx
That's great news all round for you and at least other h&n'ers in your trust Hazel. Very well done for taking it up!
For others awareness is key so thanks again.
Oftentimes management and beancounters as some have said before are the drivers behind percieved deterioration in service.
Our trust is now in it's sixth consecutive year of official special measures- Not Good- so a constant uphill struggle which I've come to realise may require astute vigilance in attempt to ensure all will be as it should be.
Here's hoping.
Well done on your 64km yesterday as well!! The stuff of distant dreams for me at the minuite I can tell you but very inspiring!
Best
Ffixx
Sometimes we blame the consultants etc but a lot of the time it's "the management" that can cause issues.
Hi Chris, I think you're on the money there.
I had a F2F and a scope on Thursday plus a nice technical chat with my oncologist (Stan was in the car so couldn't interfere)
I mentioned Hazel's predicament and he said I was definitely with him for five years and beyond. He wanted to see well people not just sick ones and wanted to be the one to discharge me. A useful bit of info was that post discharge if anything worries his patients they go to his secretary not their GP. He said they could do all this because the management were right on the ball about how cancer patients should be treated and gave the doctors a lot of leeway.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Chris
Generally it is NOT the local hospital management, but the CCGs that cause operations to cease as they have run out of money! Between NICE and the CCGs (very occasionally with Government interference) they determine what is available and how the local population is best served with the money that you pay in taxes. If a hospital does more operations than the CCG asks it to do then it is penalised (despite the need).
It is complex national and local politics that upsets EVERYONE in the hospital; that just want the best for their patients.
Hi Hazel
Just dropped by to catch up with posts and spotted yours. Good on you for making the complaint, so many people are wary of doing that for fear of upsetting the medical team they are under, or simply do not have the energy. Sadly I think these days it is needed too often. Glad you sorted it. My sister had bowel cancer 3 yrs ago and has a permanent stoma. Same thing just recently happened to her (not in my hospital area). Our local hospital area are saying Head & Neck cancer follow up is just two years, after that you contact them. Way of the world at the moment.
Jealous of your 64km x
Margaret
Well said Hazel ! Actually got seen by dentist for checkup last week and they had a good feel round my neck area which was welcome, no worries there,due to see consultant October which obviously I'm going to have to ring about as it looks like its not going to happen.
Great news you got to Spain, good on you !
Need to post more,but by mobile is not as good as it used to be,will have to try laptop.
Great believer in if it's not broke don't fix it but hey ho
Hi Martin Thank yin , Yes you will have to badger them I got in touch with my Macmillan nurse at Pinderfields when appointments told me I had been downgraded !to general ent .So yes please don’t let them forget you I pressed with getting dental appointment ours isn’t doing any general check ups last time was February. Oh yes lifingniur life’s over here plenty of biking and walking , back to Blighty next month looking like tier 3 for West Yorkshire on the cards as well. Yep hubby thinks the same but kept telling him his brick of a mobile was too 1990 s lol .Lap top should work fine give it a try .
keep in touch Hazel xx
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
2 videos I’ve been involved with raising awareness of HNC and HPV cancers
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2025 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007