It’s always stated on here that it’s best to talk to the professionals if you are confused. The subject popped up again in my news feed today.
Well, my GP advised me to request my appointment to have a discussion around my confusing prognosis and lack of a treatment plan to be reinstated (it was cancelled) because the information they sent him regarding my recovery and pathology results were far from clear. The hospital has ignored his phone calls and letter asking what their intentions were and it was only after two weeks of trying to contact the liver clinic secretary and much pressure that the appointment was reinstated.
We thus embarked on the >360 mile round trip from Wales (the 11th time since January).
Again I was given an appointment with a registrar. Although I saw her in the last liver clinic she didn’t appear to be very familiar with my case (a lot of screen peering).
This registrar told us that they could do nothing for me, although my resection was a success, the post surgical path results showed PVTT tumour cells remained and therefore my diagnosis was terminal. This was delivered in the same tone one might use to discuss a bus timetable (the bus runs at midday- you have missed it).
No nurse was present.
My dear wife asked what treatment I would be offered and the registrar replied “palliative care only”. The registrar stood up. We were obviously dismissed. My wife reminded her of the distance we had travelled and perhaps I could have my bloods tested (everything normal and my AFP is still 3).
It has been confirmed however that I am still being considered by oncology at the same hospital for a place on a trial that includes anti cancer drugs and vaccine. This is completely at odds with the registrar’s retort, “palliative care only”.
I realise that it’s normal to want to shoot the messenger and the feeling usually passes. But several days later I’m still fuming. This could have been handled so much better. I never want to go near that doctor again, but I have only ever been able to speak to a consultant in that hospital if I pay through the nose.
Just saying!
Written by
Grank
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Sorry to hear about the frustrating journey your on .
Have you thought of going to PALS ?...I'm having a nightmare myself with consultants, gp , amongst many other professionals and it's like a never ending bus journey 😕. I hope you get things sorted asap.. my best wishes..linda
You have been treated terribly its disgusting typical of some of the attitudes of people today.but dont give up hope this trial you speak of sounds a more posative step now .wales is miles from anywhere all the travelling just adds to the stress .
Yes, I agree, go to Pals. You have been treated appallingly. Please take care Lynne
We are really sad to read how you have been treated. Health care professionals have a duty of care to treat patients with regard and give them time to ask any questions they may have. As the forum members have already stated, you may want to contact PALS. Here is the link to the NHS page;
My wife has arranged an appointment with a specialist cancer nurse through our Betsi Cadwaladr Trust in Gwynedd. We now have a clinic appointment in our local hospital with a consultant and the specialist nurse present who will hopefully be able to answer our questions. We realise that it is a horrible job to be in clinic and constantly having to give bad news, but we do feel it could have been handled so much better, and with our specialist nurse present (who we have only seen twice in 11 visits).
It is tough to be in clinic and give out bad news, however, healthcare professionals do have a duty to try to ensure that is done in the best possible way it can be.
We really hope your upcoming appointments are better and you can be given time in which to fully adress all your concerns.
Keep us all posted.
Oh my goodness, the way you have been treated and spoken to is dreadful and I would do whatever is needed to get the care, time and information you need and deserve. Please let us know how you get on
Thank you each and everyone. This site is invaluable for making people cared for in difficult situations. Love is all we need!
I am saddened to hear about the totally unprofessional treatment you have received at the QE. It's sad when one bad experience can upset all the outstanding work that takes place there.
So, what would I do if I was in your shoes?
I would formally write to the Executive Chief Operating Officer Ms Cherry West. but I would C.C. a copy to Mr Vaughan Gething, (as you may know, he is the Cabinet Secretary for Health and Social Services), Wales. When ever a patient is referred to the QE for specialist treatment such as yours, or even a liver transplant, the costs are paid for by the Welsh Assembly in Cardiff.
I would out line what you have written here, and mention that because of the distances involved, going down the PALS route might not be viable at the time. (This will show that you couldn't have reported this sooner). But having said that, it wouldn't do any harm to send PALS a copy of your letter anyway.
I have always found the QE to be totally transparent and open in all things. While this letter may be seen as being a complaint, it will also be seen as being a learning opportunity. It's only by reporting what's wrong, can things be put right and made better.
I sincerely hope you get the satisfaction you rightly deserve.
I totally agree Richard this is way beyond the remit of PALS .Cancer specialists have an amazing bedside manner in my experience. Delivering the facts with no options available was cold and callous.
I truly hope that you get a better service from the cancer specialists Grank.It would have been far kinder to have sent a letter to your GP. He obviously tried hard to get you an appointment. He could have given you some hope too re the trial for new meds. I truly hope it is successful for you .
Oh I am so sad to read about this. That is a terrible way to be treated. You've been given some good advice from others about taking forward a complaint & I hope you get an apology. I hope also that you are successful with getting on the trial. If love is all you need you have bucket loads from us here! 💕💕
I'm a newbie but am a great believer in making a written complaint if you aren't happy, if only to provide feedback so that those who manage such staff can put training in place. If no-one raises the issues they assume everything is fine - and if it isn't it may very well be someone's future at risk
Hi Grank. What an awful appointment for you and what a terrible and unfeeling way to be given that news! I, like the others on here think that you should take this further and complain. Firstly, because of the stress of having your appointment cancelled and then reinstated. Secondly, because of the unfeeling way that your appointment was handled. Thirdly, because hopefully doctors will learn from this and no other person will have to go through a similar experience. If you do get offered/or choose to go on the trial, as you know you will be monitored closely, which is no bad thing. Also decisions over time can change (as in my case from terminal/palliative care/trial, to transplant) Keep those boxing gloves on!! Wishing you all the very best as always. Alf
I totally understand your frustration. I got my liver disease diagnosis in September of last year but still have not seen a specialist. I was referred to one in the States but they wouldn't take my health insurance. (I am unemployed -- supposedly unemployable according to some of the quacks I've seen -- and broke.) I was referred to one in Canada but I had to come back to the States before I could see her. I am finally seeing a gastroenterologist at the end of this month. (Eight or nine months post diagnosis.) Dealing with doctors is extremely frustrating. I've had some tell me I'm dying within six months, cannot work, and need 24/7 care, and others think my condition isn't a big deal and I should just "go to rehab." (Like I can afford it. Rehab is BS anyway, most of the time.) Mixed signals. It's very frustrating.
You're in the UK so I'm unfamiliar with the system over there but don't give up hope. Keep fighting. You're worth it.
Hi Grank, I’m horrified at the way the doctor handled this, you should certainly write that letter. When we go to see a doctor about something serious like , you expect rightly and should be spoken to in a caring helpful manner, not shocked 😮 I had a very similar experience here in Edinburgh but it was thankfully sorted. Love and best wishes Kalsoom
Hi Grank, I just could not believe what I was reading. I feel almost ashamed because we pay through the nose for BUPA (and are really struggling with the subscriptions now as pensioners) that the treatment Peeps gets is completely the opposite. It is utterly shameful. However, I have had plenty of run ins with meds on the NHS and we feel strongly as we are taking ourselves out of the health service in every other respect, and therefore not being a burden, it is not unreasonable to be in receipt of meds on the NHS only. So I have fought many a battle with PALS, our local CCG, GP and Practice Manager. As Peeps too is terminally ill, we also have the backing of the District Nurse and our local Hospice. Make use of every resource. Good luck, best wishes and love, Anne x
Hi Grank, I agree with all of the above.Write to PALS with a detailed account of your visit and the way you were treated. You have a right to be treated with care and dignity, and given the best possible treatment. I hope you get on the trial soon.
Hi Grank, that is so awful, and frustrating as one bad experience can taint all the good work other staff are doing day in day out!!!
Interestingly I saw someone talking on TV about how GMC, and those recruiting to medical training should consider the skill set most wanted in Dr's. Often the A* students are given places on medical training, regardless of their interpersonal skills.
Not that this would change your experience, but it made me think, for most people, being treated like a person, and recognising how bad news is given can affect that person's coping mechanism when dealing with such news. I do hope that future experiences are very different, and that you are treated with kindness and consideration. That doesn't cost the NHS anything. Compassion is something each of us should have for each other.
Best wishes, and good luck
Hi Grank, Such appalling treatment is such an appalling shame. I really feel for you to be in this dreadful situation ☹️.
I hope whatever you decide to do and whatever happens subsequently results in a much better outcome for you mentally as well as physically.
I do realise that QEHB have a tremendous reputation, and I was very lucky to be put forward for resection which has bought me time. I’m lucky in that I currently enjoy very good health. For the sake of my emotional well-being I have requested to attend any future clinic elsewhere.
I can understand fully your reaction - I know it will have been a very considered reaction! Let’s hope that that awful awful experience is never repeated!
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