My dad suffered from a seizure on 14th December 2017. We were told by the doctor that the were under the impression it was a herpetic brainstorm, they done 3 MRI scans and when my mum and I went for the consultation with the nuerologist, they advised that they were ruling out a tumour as nothing was showing on the scans.
What an horrendous time your Dad (and consequently you) have had.
Sadly this is all too common. Have you approached the PALS for the hospital?
I’ve experienced similar catalogues of disaster with my mother in law (for example she, like your Dad, was twice put nil by mouth in error). The last time was hours after they’d said she had 48 hours to live, a junior doc came along and said, we normally operate in this situation so she can’t have food. I wasn’t there, but she never ate again, even though she did live for two more weeks.
The only good outcome of the mistakes made with her is that I’ve avoided those mistakes being repeated for my partner. I don’t accept ward visiting times as I need to be there when the rounds are done to advocate for her and ensure things move along. If I encounter any bolshy professionals. I write their name down in my notebook which sometimes gets their attention. The unprofessional ones are threatened by the notebook as they aren’t keen on accountability.
Hospitals are set up with everyone doing their little job and no one manages the whole patient. It’s poor, but you need to do this. You need to grasp it. It’s so easy for things to get missed, even when you’re chasing them. If he needs some meds like anti depressants then you need to be asking every day. It shouldn’t be like this, but it is.
My partner has been writhing in pain in. Hospital and was left like this for three hours! I’ll never leave her alone in hospital again and will stay overnight or be thrown out by security. Hospital care is poor and if they’ve a quiet person not making a fuss, then they love that bed blocked to prevent a more challenging patient coming along.
The good news is that you can take action. Get PALS involved. Ask for referral to palliative care team if they have one. They may not help but I’d try every avenue . Attend the ward rounds and ask questions. Instigate a complaint if you need to but personally I wouldn’t bother, it will take energy which could be used elsewhere. Follow up every aspect of his care, get names of contacts of the different aspects of his care and get numbers and call them! You want him to have physio ? Ask for it. Ask why he’s not getting it and if you’re not happy say “ let me write this down ”. Take the name , job title and reason they said no from that person. They may change their mind once you start doing this! You may never get your old Dad back but you can certainly recoup some of his lost self and definitely prevent him slipping further away.
For now I’d think that, the person giving the antidepressants may not have been knowledgable about them. Are they the most suitable ones? Is it the right dose? These are the questions I’d ask. Remember not all Work for everyone and sone have an adverse effect. So I’d be monitoring and asking questions about tweaking them. Remind them that getting his emotional well being sorted will impact his physical healing. Gavectgey got his pneumonia treatment right. Is he getting all his doses every day of his meds? If he’s in bed arecthey cgeckungvhus skin? (I had experience of signatures saying skin checked for a week when no one had looked at all!).
It’s an absolute battle but you’ve reached the point of knowing that his care is so far from good enough that it’s living in a different world. It’s not right that you need to do this, but if you don’t then no one will. If they challenge you, remind them of the huge list of errors made.
You can’t correct what’s past but you can get a grip in things from now on. .
If you look hard enough, there’s something positive in every day.
My heart goes out to you. I have cried when I read your story. It’s an absolute disgrace to me that you had to wait that long for biopsy. Please please people don’t let this happen to our Uk citizens, if there is anyone with any power out there at all please help the NHS.
I want to say a huge thank you to for sharing this and will now try and find out as much as I can legally to see what our rights are in the UK when it comes to health care. Everyone should be fully informed of this. To me it’s tantamount to inequality at the least.
I too am just getting over breast cancer and am awaiting radiotherapy. I live here in France but we will be coming back to live in the UK. After reading this I am seriously thinking about becoming a volunteer in this area of health care as I was a qualifies counsellor before I retired.
I send you all kindest wishes to you and your family - Siepie
Hello I am so sorry to read your post but unfortunately this is all too common.
I too had a bad experience when my mum was diagnosed with primary central nervous system lymphoma in her cerebellum within the brain.
Mum was a patient on 3 wards during her 9 weeks in hospital & im afraid there where issues with all 3 of them.
Whilst we did encounter some good staff I have to say a lot of them weren’t what you would expect. And certainly not when you have some one with a terminal illness.
The first ward was filthy & I brought this to the attention of the nursing staff, it was a 48 hour short stay Ward yet mum spent 11 days on there waiting for a bed on the brain surgery ward.
Once in the brain ward an oncology nurse visited & left a leaflet, this was prior to surgery or any diagnosis and whilst cancer is at the back of your mind all it did was cause my mum & me further distress. Mum had surgery & came back with a very swollen tummy, they said it was constipation & started her on laxatives. Mum was struggling to see to herself so I was showering her every day & you could see this tummy was full of fluid but the staff wouldn’t listen so my poor mum ended up in a right state. We received diagnosis of pcnsl at her bedside with no specialist nurse and for the rest of the ward to hear. The consultant wrote her diagnosis on a piece of paper & told me to go home & google it.
Mum was moved to oncology with the hope of chemo treatment but the swollen tummy was an issue ... it was fluid (ascites) not constipation !! They began draining and stitched a drain in place which subsequently fell out, a stoma bag was put over the drain site which then was left unchecked & became infected. As mum deteriorated and was constantly asleep she was over looked & just left, not turned or has pressure areas checked, even thought they were writing In her care plan they had. I was showering or bed bathing her every day & they asked me to check for them. When they decided no treatment could be given they called me in to deliver the sad news that she was going to die, and I was directed to do so by a registrar. A specialist nurse came to see us, left a card & told us to leave an answer phone message if we needed to see her again... not quite what you expect when your loved one is dying!! Mum deteriorated further had a few falls trying to get out of bed as when she rang the nurse call no one attended. We were promised a palliative team would visit, that visit never happened. Then I was called in to see the consultant but on arrival it was actually a social worker who informed me I had a week to find my mum a bed in a nursing home for end of life care, no mention of a hospice. I was shell shocked but complied and mum was moved to this care home where she died 11 days later.
In November 2016 as a promise to my mum I emailed PALS and logged my complaint. It took them till May 2017 to respond and I went in for a resolution meeting, it lasted 3 hours, I had a lot to say!! I too had dates and names and some of the management team where dismayed at what an ordeal we had had. I have since done a fishbowl technique type meeting with members of staff & have also made a DVD regarding our experience which is to be used for training purposes.
I did all this as a lasting legacy to my mum & in the hope that no other family will have the horrid ordeal we did. Do I think the attitude of the staff will change and the poor care we encountered.. probably not but at least I tried. The thing is, no one is held accountable, and no one actually checks that the being open improvements actually are upheld.
I took my mum to her GP on the 17th August 2016 and she sadly passed away on the 31October 2016. Just 11 weeks from visiting the doctor & 7 weeks after diagnosis. Those 11 weeks where the most horrific time of my life made much worse by the care & staff we encountered. I have had some counselling who have diagnosed me with post traumatic stress disorders because of it. Our experience could of & SHOULD of been so much different with the correct level of care.
I beg you to speak out and make sure your dad gets the care & compassion he deserves. Will watch out for you future posts.
Good luck & lots of love to you &Your family
Oh my goodness. I'm so very sorry for what's happened. BryonyO does have the right idea though. PALS could make a big difference in your case. If not, you can take concerns or complaints to the Hospital Trust or the Clinical Commissioning Group/NHS England. The more you want to escalate, the higher up you have to go, unfortunately. I'm sure there's info online that could help.
In the meantime, you sound like you're the rock he needs. You're a caring person looking for answers for him and are doing the exact right thing. Hold strong. x
People have given you some very good advice here and I wish you well. Just wanted to add: if you write a complaint, or submit one through PALS, keep onto them about it. I did a complaint through PALS recently and I kept chasing them, asking for a date when I could expect a response, asking them who is dealing with it. Keep on at them every few days until you get your written response. Polite but insistent. Good luck with everything.
As other people have said on this post, there have been some awful mistakes made with not only your Dad, but others. I do feel for you.
My Mum died due to errors made by the hospital. Although she survived for 4 days after she was resuscitated having being not given enough fluids, overdosed on opiates and a drug called gabapentin. They even ran out of stocks of naloxone (the antidote to the opiate drug overdose). This was after she had been discharged with sepsis (following a tiny cut to her toe which ended up being amputated because of infection). When she was readmitted, they mixed up who was dealing with her and I quote "not septic but unwell" on her notes - but the sepsis had attacked her spine by this time.
I received a letter offering condolences but "overall your mother a good standard of care" - so that was it, I saw red and went to a solicitor to get the apology she deserved. It cost me thousands and over 3 years of my life. Unfortunately, because she was resuscitated for those 4 days there was no legal proof that they caused her death. Despite the fact that an hour before she needed intubating and I was advised that nothing more could be done for her, they had stopped the naloxone infusions. I am glad I went to a solicitor to help me investigate, but it really didn't achieve anything except to relieve my anger and it made me feel as if I did everything possible to 'fight' for my Mum and for her memory.
What I learned over those years:
1) Find out if there is an independent Advocacy group linked to the hospital who are similar to PALS
2) Request a meeting with the team dealing with your Dad via PALS or the Advocacy group / if no time - insist on a meeting direct.
3) After my Mum - I became my Dad's legal guardian (seriously disabled from a stroke 5 years before my Mum died) - whenever he went into hospital: I refused to stick to visiting hours and I went into help him eat/ drink - any odd times during the day to monitor his care. Lucky I did as they made several mistakes with his care too! Some of them were life threatening. The Doctors realised I wasn't 'a normal visitor ' when it came to my Dad due to the number of questions I asked, the amount of checks I made on his notes, fluid charts etc and I didn't give two hoots what they thought of me - I told them what I expected for my Dad and because of that, they arranged to meet me every day at 1pm to discuss his progress! I did have a health and welfare power of attorney for him which did give me a lot of legal rights. Especially when I was told by some nurses who hadn't done their job properly that "due to patient confidentially... blah, blah," I was able to point them to the power of attorney and demand answers. I will say, that there were some nurses who were really grateful that I was in there helping out because they were so busy and because he had dysphagia (eating problems) it took up to an hour to feed him and they wouldn't realistically have had the time. Position it right and they may be delighted to have someone in helping with your Dad's care, but you will also be able to ensure he's being looked after and see the doctors when they come round at times which are ALWAYS never during visiting hours!
4) I obtained Mum's hospital records. It cost £50 (might be more now) for the photocopying. But next of kin can ask for the records - your Mum can request your Dad's records. (I found nearly 100 serious errors made by the medical team in respect of my Mum's care - if just some of these hadn't been made, I truly believe she would have been alive today and I wish I had known more at that time to have challenged far more than I did - the day before she needed resuscitating, I'd complained to the doctor just how poorly she seemed to be and that I didn't think she was drinking enough / hallucinating etc. If the doctor had been switched on, he would have realised this was the opiates/gapapentin overdose symptoms).
5) Overall, you know your Dad better than anyone - if you believe something is not right with his care from now on - kick up a stink, don't worry what they think of you! Then check a few hours later that someone is doing something (his antidepressants being an example).
Thinking of you at this very difficult time,
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