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Fobbed off yet again by hospital

(86 Posts)
HAZBEEN Wed 26-Oct-22 11:20:59

Bit of background, I was diagnosed with a type of Blood Cancer in September 2020. Because of Covid I was given the news in a garbled phone call with no prior warning what to expect. Since then apart from 2 appointments at the infusion unit to have a blood check and receive my oral chemo prescription (back at the beginning) I only have 3 monthly phone consultations. After each of those (5minute) calls the consultant orders a new blood test before the next call and authorises my prescription which I pick up locally.
In July my consultant said she was leaving and I would get a new appointment in September/October from the new Doctor. Having heard nothing I rang the hospital and was told they didn't have a new consultant yet and the others in the department are refusing to take on any more patients.
So now I have no one looking after my case.
I emailed my GP (they dont take phone calls!) but no response after a week. Just rung PALS and they are chasing up the department but thats it.
I needed a rant about this, thanks for being there!

NannaFirework Fri 28-Oct-22 16:26:23

Hope you got your blood test in time - honestly things are getting ridiculous around here (Berkshire) hope you are ok ?

win Fri 28-Oct-22 17:28:18

Any issue like should be reported to Healthwatch who are brilliant. So pleased PALS helped in this instance and hope your support will be much better from now on. Have you got a 1to1 nurse now you can call anytime? Also you can have a referral to Hospice who will be your in between person and make sure everything goes to plan. My Partner has blood cancer so we are on a similar journey but with palatine care as he has declined treatment except for 4 weekly blood transfusions ?

SolitarySpirit Sat 29-Oct-22 06:57:59

Glad to hear you have got an appointment Hazbeen it can be a minefield navigating all the different doctors and departments when you are first diagnosed even more so during covid. I hope now that you get regular visits. MacMillan are an excellent form of support, they can answer any questions you may have and in some cases make calls for you once you have been referred to MacMillan nurses, they will be there for you at the end of the phone whenever you need them, it may be worth mentioning it at your next visit to hospital. Also might I suggest that you write a list of all the questions you have to take with you. When I was first diagnosed my head was in complete turmoil of emotions and questions, best to try and make some order of them if you can.
I’d be happy to help going forward in anyway I can if you want to message me, I have been on this rollercoaster ride for four years now so if you have any questions, if I don’t know the answer I can probably point you in the right direction.

Lizzifish1 Sat 29-Oct-22 10:41:27

Keep going through PALS and also write to the Chief Executive of the Trust. If you raise a formal complaint they will have to include it in one of their meetings. and they don't like complaints!

MissAdventure Sat 29-Oct-22 18:01:05

This thread must have worked some magic.
My long awaited appoinment with the the liver man came through today. 🙂

Whiff Sat 29-Oct-22 18:43:25

MissA that brilliant. Hope all goes well.

Forsythia Sat 29-Oct-22 18:47:05

That’s great news for you.

MissAdventure Sat 29-Oct-22 19:26:01

shock
Well, sort of.
He did mention a liver biopsy, and I'm a terrible coward!!!

Whiff Sun 30-Oct-22 06:12:36

MissA I know from other threads you are no coward you have battled on no matter what life throws at you. The biopsy will put your mine at rest and is the best way to get a definite diagnosis. They will make sure you won't feel anything and a nurse will hold your hand and talk to you while having it done if you ask.

The main thing is you will be getting the help you need now and for the future. 💐

madeleine45 Sun 30-Oct-22 10:28:07

I had cancer over 20 years ago and now have bladder cancer. The consultant for the bladder cancer is a woman, very switched on and organised and I am happy to believe what she says and trust her judgment. It was also thought that I may have lung cancer (NEVER smoked!) and the rather dismissive male doctor said I would need this specific x ray and that he would contact me and discuss the results. Had the x ray and after 2 weeks of not receiving a letter or phone call from the specialist, I naturally was getting more worried and rang only to find he had "forgotten" to post a letter to me. Said there was a shadow on the lung that needed to be watched. Said sorry on the phone but no letter of apology and result is , they say that they need to check it but nothing is happening, not getting any bigger etc. You will understand why I dont trust a word he says and think he has behaved badly and in a cavalier manner. Wrote to the hospital regarding this , because I dont want anyone else to go through this and miss important treatment. My other gripe is ageism! Whatever you have a problem with , you are told you should expect that at your age. Why??? I had a very dear friend I met out walking when I was 40 and she was 82. She was very fit, walked , played a bit of tennis etc lived on her own and took no medication. When she had hip problems I took her to the hospital and she was in a wheelchair. The receptionist said "what medication do you tgake" to which Marjorie replied "None" The woman looked at me and said does she have her medication with her?" to which I replied"Ask her yourself. She is sitting there" She then asked Marjorie when she had been in hospital and her gp etc. Marjorie had only been in a nursing home to have her two children, took no medication, her gp had retired and she did not know the name of the new one!" I realize that not many people are as fit as her, but it is good for people to learn toat being old does not necessarily mean being ill!