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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!

Grantanow Fri 28-Oct-22 12:30:37

PALS managed this for you (and deserve a word of thanks) but the problem reflects the general situation in the NHS - not enough doctors etc., overwork, inadequate buildings, bed blocking, ambulance delays and much more. I doubt the government will do much about it other than making a lot of noise and looking busy.

icanhandthemback Fri 28-Oct-22 12:33:45

HAZBEEN

You ladies have given me such a laugh this morning when I caught up with this thread!
I now have to go into battle today to get my blood test before the appointment on Wednesday or there will not be any use speaking to the consultant! Seemingly there are no appointments at either the GP or the local hospital!

Back to PALs I would think! Honestly, when my Mother was in Mexico 35 years ago, the service was better than we are managing at the moment!

crazyH Fri 28-Oct-22 12:34:35

HAZBEEN - hope everything works out fine for you.

Oh Miss A - that made laugh. I needed that, after all the household problems I’ve had - had to have a new garage door. but it’s so heavy, I sprained my shoulder trying to open it. My SKY magic eye, not working. So ordered new one . That didn’t work either. So called the engineer - he came- 15 minutes and £65 later, I’ve got Sky back on. Have a nice weekend everyone

Annie29 Fri 28-Oct-22 12:44:04

How worrying for you,its just not acceptable. Have you thought about contacting your MP

Kryptonite Fri 28-Oct-22 12:45:20

I find this outrageous and unacceptable. You can choose to have your cancer treatment at another hospital, so maybe that might ensure you can get the treatment you need. I would be very stressed to say the least in your situation and lacking confidence in the hospital. I have to wait 5 weeks for mammogram results (5 years post cancer, so this is a bit of a milestone). After 4 weeks' wait, I managed to get through to someone who said this is because of staff shortages and illness. Caused me much anxiety indeed. Haven't seen any doctors or consultants since beginning of Covid (all over the phone), except when I was in A&E, when I saw 5 doctors!

MissAdventure Fri 28-Oct-22 12:51:11

I saw a hepatologist (I think!) in February, and am still awaiting my follow up appoinment which should have been four months later.

I've left messages lots of times, but nobody ever gets back to me.

Saetana Fri 28-Oct-22 13:10:51

Sorry to hear what you are going through. I would suggest contacting your local MP - this is exactly the sort of thing they are supposed to help their constituents with, and action from an MP usually gets results.

Saetana Fri 28-Oct-22 13:12:13

Ignore my last comment - just saw that PALS came through for you. Hope everything goes well for you flowers

Pammie1 Fri 28-Oct-22 13:28:49

If the lack of a consultant means that there is no-one to authorise either the blood tests or the treatment, then I think you need to escalate your enquiry through PALS to a complaint. And as others have suggested, make a lot of noise.

Maya1 Fri 28-Oct-22 13:49:17

Hazbeen this is shocking treatment, l hope that you are soon sorted out. I don't want to be negative about our NHS but l think it has become chaotic.
We use Addenbrookes on a regular basis as my DH has had a double transplant. He has been very poorly the past year and they are not able to find out what is wrong with him.
When he was admitted recently, we couldn't speak to a doctor as they were too busy, the nurses actual words. I don't blame them at all as they are all doing their best. Extreme staff shortages and stressed beyond belief.
I am just grateful that my son, dil and dgd have private health care so hopefully should be OK.
I don't think we will be.

Wong Fri 28-Oct-22 13:58:05

Sorry HAZBEEN you are in such a bad situation. I have a similar situation. Was taken in to hospital in May as an emergency, during which time it was found I had a 'suspect' lymph node. Discharged two weeks later. Had a biopsy which proved inconclusive, then it al went completely wrong. I am having surgery on Wednesday to remove a lymph node as a biopsy. Then another couple of weeks while it is decided treatment plan. I now have several infected nodes under my armpit and on my chest, according to a scan I had! Great. Six months to actually reach a potential diagnosis for my lymphoma (type of cancer). Still not getting treatment. I have lost 14 kilos in weight and have had breast cancer before and have a real raucous chesty cough! What a shambles our NHS is in. I have had appointments cancelled and then told I didn't bother to turn up. Its scary, I'm not sure I'm going to get the right treatment when they do eventually reach a conclusion. I'm noty sure it is doctors and nurses at fault. I am convinced it is the chaotic, disorganised admin staff who really don't give a toss about us patients. Although I have had promises from cancer nurses and haematology staff that they will call back and they haven't. I hope you do get better treatment in the future HAZBEEN and successfully come out the other side. Sending virtual cuddle.x

Esspee Fri 28-Oct-22 14:00:45

Do people not read the full thread?
I’m so happy to hear you have an appointment for next week HAZBEEN
Any luck re. the blood test?

4allweknow Fri 28-Oct-22 14:27:48

I had an issue 20 years ago about DHs surgery being cancelled last minute (he was actually in theatre having had pre-med). I contacted the local newspaper with details. Printed front page next day and phone call from Chief Exec fir meeting with him, Head of Nursing and Surgeons . Boy did they jump. The actual surgeon was grateful I had taken action as he was fed up with lack of theatre staff. That was the problem, staff covering main hospital and separate maternity unit and some on naternity leave. Hospital had not taken on staff to cover. Use your MP and press. You should be on a schedule for a blood test, why are you not given an appointnent for your next one at the time you have one done. I have an appointment for 8 months ahead!

Callistemon21 Fri 28-Oct-22 14:31:11

Wong I hope you get a proper diagnosis and receive the treatment you need urgently.

Good luck.

rowyn Fri 28-Oct-22 14:31:54

Maybe someone;s has suggested it already, but if not, Please get in touch with Macmillan cancer support.
When I had cancer they were automatically informed by the hospital and I was allocated a contact support worker. Luckily my treatment was pretty straightforward and everything was done very smoothly and quickly. But I knew I could have leaned on the Macmillan contact if necessary. They will be able to give you advice re your condition and treatment and know how to ensure that you get the treatment you deserve.
Sincere good wishes for a complete recovery.

undines Fri 28-Oct-22 14:34:00

Make LOTS AND LOTS OF NOISE. Get relatives and friends to add their voices, too. Not good enough. Too often we feel somehow apologetic about fighting for ourselves - if that's you, I hope you can get over it, because you deserve better.

MissAdventure Fri 28-Oct-22 14:34:15

All I can say to that is that Macmillan also varies wildly on the kind of support you can expect.

Callistemon21 Fri 28-Oct-22 14:36:04

You should be on a schedule for a blood test, why are you not given an appointnent for your next one at the time you have one done. I have an appointment for 8 months ahead!

In this area, blood tests are carried out either at the GP surgery
and what a fight it is to get an appointment or with a peripatetic phlobetomist who is not here on a suitable day for the tests to get to the right place.
The hospital sends the labels, the rest is up to the patient to sort.

The surgery won't give an appointment more than six weeks in advance - even though the wait for a routine appointment with a GP could be 8 or 9+ weeks ?

HAZBEEN Fri 28-Oct-22 14:59:42

Similar system in this area Callistemon, except our surgery will only book 4 weeks ahead and you have to crawl over hot coals to get one! The testing at our local hospital is appointment only and they were booked up into December!
Luckily I managed to contact the surgery (emailed them then phoned then went in!) and have had my blood test this morning! I did have to resort to pleading but it was the "nice receptionist" on duty!
After I speak to the consultant they put a request on the system to be done before my next appointment, then about a week later I normally receive my appointment date and it is down to me to arrange the test so the results are ready.

Whiff Fri 28-Oct-22 15:05:20

HAZBEEN very glad you had the blood test today. Hope all goes well next week.

grandtanteJE65 Fri 28-Oct-22 15:07:50

This strikes me as being out of all order, but I don't live in the UK, so my advice may not be relevant.

Here you could demand to be transferred to the oncological dept. that does have a consultant who specialises in your disorder.

Are there no associations for cancer patients and their families in Britain? If there are, get in touch with the most relevant one immediately and ask what they advise.

Maya1 Fri 28-Oct-22 15:10:21

Hazbeen, that's great news about your blood test. Hopefully things will now be back on track for you. Please let us know how you get on.

Callistemon21 Fri 28-Oct-22 15:10:29

Oh good.
They lost my last lot although the one that goes for further testing was ok.
They are always 'losing' samples somewhere in the system.

Coco51 Fri 28-Oct-22 15:30:51

Are there any support groups you can share your worries with? I know this is not going help to get your appointment, but sometimes just letting off steam with people who have the same condition as you and understand the frustrations.

That said, your GP is your first point of contact and should really be chasing the hospital for the medical care you need, or as an alternative see if another hospital can accommodate your needs.
I think it is outrageous that you are left hanging on with no immediate prospect of seeing a consultant. I wish you well.x

GreyKnitter Fri 28-Oct-22 15:52:37

The NHS a is truly broken and it folks like you who end up struggling. There is obviously a breaking point for all staff and departments but seems so unfair when people in your situation don’t get the treatment they need. My disabled granddaughter has similar issues - physio off sick since August and no one else can take on her case as they’re all stretched to capacity so months with no treatment and none in the foreseeable future. Not the same seriousness as your case but still very frustrating for everyone. She sometimes says “I don’t think anyone cares about me anymore”. Not good when you’re 15 and in a wheelchair and in constant pain. Hope things soon improve for you. Fingers crossed.