Hate to go over old ground but I still can't shake off the depression regarding to my PBC. To be honest the hospital hasn't helped as my 6 monthly check has now become 9 months due to a cancellation. Just feel like no one at the hospital really cares about my illness. Not had a blood test since about March. I was meant to have a fibroscan still waiting despite me ringing the consultants secretary.
Feeling forgotten and feeling like I want to make a complaint to the NHS regarding the neglect
Any opinions folks. I'll be happy to hear what you think
hi mike i just read your post and thought id say hello. i dont have what you have but have other problems and pains and when i saw that you were fed up and felt no one cared i could understand that as i feel like that a lot myself. so i just wanted say that your not alone. its quite late and i suppose many people will be in bed but im sure others will rally round with suggestions. i dont know you but i do care as i know what its like to be in pain or alone or have an illness and feel neglected. the thing is im powerless as your miles away and i can only send good wishes and prayers and thats exactly what i sending. i pray that you will have a nice good nights sleep and there will be messages for you when you awake. goodnight mike and god bless you dear. love grace xoxoxo 🤗
I felt like this a few times, but things were happening in the background. After a recent appointment I received a phone call to change one of meds. Illness does get folk down and makes you feel depressed. Take life a little bit easy as for your appointments I take mine as good news.
Sorry to hear you are feeling depressed and neglected by Health Services. I have been struggling a bit recently, I have been trying to get back to work, but feel as though my employers are making me jump through hoops. I am now at the point were I don"t even feel like I want to return, I am due to see Consultant soon, but I do agree that it feels like you are very much left alone to just get on with it. I consider myself to be quite positive, but I have really struggled with this diagnosis and adjusting to the urso and adapting in general. I think it is difficult with fatigue and feeling mentally and physically drained to avoid a low mood.
It might be worth contacting your local Patient Liaison Service (PALs). You should be able to google their contact details. I think they can assist you with complaints. I know that I contacted them before when I was unable to find out about appointments, and they were able to find out for me. Have you spoken to your Gp about how you feel about the diagnosis, I wonder whether there is anything that tbey can offer?
Try to do something you enjoy, and be kind to yourself. As Grace posts no doubt in the morning there will lots of advice from other people which might provide a course of action for you. I hope you feel less fed up soon.
Take care from an also fed up. Here's hoping we wake tomorrow with a positive outlook.
I know how frustrating it can be, the help seems to be on a go slow. There's not a lot they can do once you have a definite diagnosis apart from, ursofalk to slow it down and we learn how to cope. Please don't feel worse with what I'm writing but my advice for you is to concentrate on the things you can help with, your depression can be helped by seeing your gp and get referred to a councillor to help you cope with your illness they have specialist advisors to help you cope with long term illness.
There is a bit of a wait there too but at least you can get that moving?
Secondly have you phoned the PBC FOUNDATION THEY CAN ADVISE YOU ON THIS.
It's so frustrating when your appointments get cancelled I would defiantly speak to you GP about the feelings of depression though he will be able to help with it..
I found myself in a similar position where I had a cancelled consultant appointment due to a scan not being done in time. A booking office put my scan appointment a month after the consultant visit , but he never had anything to discuss with me without its results. (It was not related to PBC so the scan was really important at the time) anyway It may be worth a try, making a few calls.
Call the appointment booking office and see if they have an earlier appointment, it would of been them that booked it and they may have an earlier one, or a cancellation, rare but has been known.
Also call the radiology to see if they have received the scan request from your consultant, if they have they may be able to give you some idea of the waiting times, also let them know when your consultant visit is. (They may try and get it fitted in)
I would also go to the GP and ask for the bloods to be done that way at least your consultant will have up to date information when your appointment does finally come around. It's hard but try and stay positive and call the pbc foundation iam sure they will have lots of other advice. Take care
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Hello Mike.
Know this might sound silly but if your bloods were thought to be of a dire nature then I am sure you'd be seeing a doctor sooner.
I know how you feel regarding hospitals and doctors. I get this at my GP surgery. PBC doesn't seem to be something that seems to be taken seriously and I put it down to a doctor's lack of knowledge with it being such a diverse condition due to everyone seemingly have certain things in common but everyone being at variable stages with it. Also given it is said to be 'slow progressing' I think that too has some bearing on the medical profession.
I think also it depends how you feel about PBC too. I am one that won't divulge I have PBC to most people. My family know (not got a big one) but from the early days a few members didn't take it seriously (same year I was diagnosed with PBC (2010) my brother-in-law who is the same age as me had a double heart bypass operation and he has made a good recovery and returned to work within a few months. His condition was how I say, 'fixable' and with care it shouldn't progress and I think he reckons I have 'something and nothing'. Another family member just assumes I 'pill pop' daily and everything will be all fine. Reality is going forward into t he future is unknown with having PBC). I just try to get on with life and at times get inwardly annoyed when I hear someone whine about having a common cold as they are perfectly healthy otherwise but then I remind myself that they do not know I have PBC and I don't yet want that person to know if a close friend.
I've not had any blood checks since earlier this year either. My GP did state to me in eprson that if I didn't go in for a repeat of the bloods at the designated time I'd be reminded. Well I've had prescriptions filled out since the date I should have gone for t he repeat bloods and also the medication review date was in July but it just got changed on the repeat prescription without anyone even saying I'd not been in person to see a GP since July last year!
I used to make my own appointments for the bloods taken at 3 monthly intervals and insist I see a nurse to do them as the Healthcare Assistant isn't authorised to add anything (the GGT never seemed to be on the list, the nurse used to have to add it as I insisted she go through what she was going to be taking). The GP then informed me I didn't need to go in this frequently and after being diagnosed almost 6 years now I think I have got a bit sloppy myself and say I'll get round to booking the bloods before the year is out. I still feel the same as I did at last bloods, nothing seems to have changed so I just get on with life. (I will however have something to say to the surgery when I next go in for a prescription if whoever signs the prescription doesn't pay attention and take note I've not been in surgery to see a nurse or GP though in awhile.)
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I have to admit I haven't told everyone either. Haven't told my employer as I can do my job it doesn't stop me working and from my experience with other problems they aren't bothered what's wrong with you. If you go sick your breaking your contract so rather keep it to my self.
I do understand it's slow progressing but that isn't an excuse in my eyes for lack of care. Nothing to say I couldn't suddenly get worse after all !!
Thanks for your comments I guess this is what we will have to put up with now as the NHS goes into meltdown
I empathise too. who wants to give into depression when there is enough going on without that to deal with! the result of the physical side effects (which vary for us all) can be enough to floor anyone, the emotional issue of the diagnosis, and the inevitable changes we have to make to adjust to our new position we find ourselves in are huge, I could not accept the enormity of it all myself, i was properly depressed but would not admit it! making the lives of those around me right and proper bad!
I started to experience quite strong effects of Hepatic Encephalopathy, in a way this was my saviour, I went to Dr. was referred to counselling, and was offered Citalopram (SSRI anti depressant) this at first was difficult for me to accept, ME on anti depressants? no way, I am strong and tough me (not to mention the "shame" of admission of depression and guilt etc.
For me they opened up my life, I was saved by thses little pills! now not everyone is in need of such therapy, I am no Dr. but I only offer my experience to you and the world, if nothing else it opens more people up to the issue of mental illness (how ever caused and how ever deep, depression falls under this heading) and how we might all be more open to accepting, discussing and dealing with mental illness in general, and depression in particular.
I hope I have not made you more depressed! advice, deal with issues you can change directly, if concerned about treatment, bang on the door of the consultant / Doctor / nurse / administrator. Demand answers!
Good luck ! stay brave, and remember 99% of the worlds population would swap places with you right now given half the chance! Always remember that light at the end of the tunnel is daylight and not an oncoming train (until such time as you can proove otherwise!)
Hi just to add that tablets ( anti depressants ) are not the only option, they can be used as a temporary fix as you wait for a appointment for counselling, I have found this really helpful at times, I've asked for counselling a few times as you get a set amount and then you feel better and may not need it again but something tips the wrong way ( something goes wrong) and you might feel you need a little bit of counselling again or not. We are all different and deal with things in different ways too, do what works for you but remember your not alone and we're going through it too or have been there.
I too had a cancelled consultation with the gastroenterologist I first saw and my initial response, like you, was distress and feeling let down. However, I made an appointment with my GP and asked to have the planned 6monthly blood tests done anyway so that when my rescheduled appointment came through they woul have something to review. The cancellation was the spur I needed to research liver specialists at hospitals within travelling distance and I asked my GP to refer me to the one that I chose. She did and I was transferred to a consultant who specialises in PBC and he was very happy to have relevant blood tests to review at my first consultation. Our NHS may have faults but there are plenty of positives too.
As for feeling depressed, it may be worth seeing if there is a PBC group (PBC Foundation) in your area or one near enough to travel to. Talking with those who "get it" really helps.
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