PALS meeting (Patient Advise and Liaison Services)

After 7 months, I’ve felt I’ve begun to find some balance.

There’s not a day goes by when N isn’t in my head or heart at some point, but I’m managing to find some little bits of order, some pockets of peace, and some things to do that are just for me…

…tonight though, I’m sitting surrounded by hospital letters, medicine lists, diaries and calendars, putting together a timeline of N’s diagnosis, treatment and the hideous last week of his life, in preparation for a meeting with the PALS and MDT next week.

I was so certain I wanted answers such as, when did we ‘drift’ from pancreatic cancer to bile duct cancer, I wanted to know whether there were learning points that could help others, to find out if there were missed opportunities…

And now, I’m scared of what the answers might be.

Has anyone been through this process and did you find any comfort from having answers?
(please feel free to message privately if you don’t want to share your experience publicly, I understand this is a huge and personal question I’m asking)
Thank you :purple_heart:

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It is very had to find answers. I tried to complain about the ambulance service , when they would not come out to my son,as we could not get he down the stairs to no avail.I wanted to know after taking him to a walk in clinic and to try and get physio,I was told muscular to rub deep heat in. Was told at the hospital that was a mistake. He had secondary bone cancer,they could not find primary.Just before he died they said they found a tiny ulcer on the lesser curve of the stomach 20mm, they said it was not blocking any bile ducts hence no symptoms. I do wonder if the medication he was on for years with epilepsy could have caused it , I have filled in a yellow card form on line for it. So many ifs and whys Cancer is so hard because it is the body own cells going wild, I believe we all have cancer in us it is our own immune system stops keeping control of it. I wish you all the best and good luck with the meeting ,but there does seem a brick wall every way you turn. But we never seem to get closer to an answer.

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Im going through PALS at the moment. Ive been waiting weeks for my husbands medical records and the answers to questions i submitted months ago. They apparently are short of staff and ive been told the answers should be given in 2 weeks max. I got the records but i couldnt download them so theyre sending paper copies so that’ll be a while again!! Ive got an advocate who will be helping me and a grief nurse that will ho me with the records. I have now started getting my IBS back and suffering im sure its all this coming to a head and ive got to deal with it. Its just bringing it all back isnt it. Its 6 months since my husband died i promised him i would do this as he was so upset and angry at his treatment. Hope you get on ok.

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@Miniaturist5 @Pest
Thank you both so much for sharing your stories.
I dont think I’ll really get much in the way of answers either.
N’s case was so complex, with many other things going on aside from the cancer.
Originally, I believed I was going through the process for him, but i think I’m really doing it for me…hoping it’ll bring some peace of mind.
We’ll see…

My deepest condolences. I lost my partner of 16 years in April 2020 and my complaint with the hospital regarding his end of life care is still ongoing. I wrote to the Chief Executive of the hospital and he passed the matter to PALS.

I had to fight for my partner’s medical records and I received what I would later discover to be only a partial copy, though described to me as a complete copy of the medical records by PALS. Numerous emails back and forth culminated in finally receiving over 500 pages of clinical notes that had been withheld. It wasn’t until 18 months after my partner’s death that I learned he’d had a fall 5 days before he died. Before the fall he was independently repositioning and mobilising around his room but almost immediately after the fall, he was confined to his bed and the medical team’s position suddenly shifted to end of life pathway and the withdrawal of hydration and feed against my partner’s wishes; he spent his final days pleading for their reinstatement. To silence him they knocked him out with midazolam. When he regained consciousness he told the consultant that he didn’t want to be sedated and he specifically asked that this be placed on record; he explained that he wanted to be lucid, have more time and sort his affairs. The day before he died the consultant agreed to reinstate my partner’s feed. We were told it would buy him more time but just 45 minutes after that positive meeting the team surreptitiously commenced continuous terminal sedation without any discussion or warning and my partner passed away without regaining consciousness the next morning, brutally robbing me of a farewell. No one explained to me what was happening, or told me that it was time to say any final things I
might want to say to the love of my life before he would lose consciousness. I cannot stop ruminating over
this and how I had sat at his bedside completely unaware of what was being done when I could have been lying beside my partner and holding him in my arms until he left me.

Making a complaint to a hospital is a long and distressing process not helped by their default position which is to either avoid answering difficult questions altogether or to respond with blanket denials of events you actually witnessed; even when the events are documented by medical staff. I received a response to my initial letter of complaint within 3 months but I waited 15 months for a response to my second letter. The matter is now with the PHSO but that is also a very slow process.

I wish you all the best.

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@Buttercupxxx Thank you for sharing your experience, I’m sure that wasn’t easy. Your story is heartbreaking to read. I’m sorry that my question has dragged up so much many difficult memories for you.
Hugs

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Can you please help me as to where I start with putting in a complaint about the way my husband was treated before he died. I have requested notes but they told me it would take some time as they are so busy. Where do I start. I live in Scotland

Dear buttercup
My heart goes out to you and i identify with what you are saying and going through. I lost my husband 5 weeks ago and am heartbroken. His treatment was awful and I need answers and do not know where to turn for support. I tried the doctor and they said if you have nothing wrong with you then why are you phoning. Then they said do you think you will take your own life? The advice was to phone the consultant and ask for an explanation

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@Marshmallow - I’m sorry you’ve had such a tough time… I’ve had a quick look for you. The doctor at the surgery is right, it’s best to pick it up with the consultant and the MDT first if possible, but if you’re having no luck, read through this link. There is a drop down box where you can choose your local health board…
It will take time to sort even a first appointment, but stick with it. It’s still very early days for you and something like this might upset you more (if that’s even possible!!). If the process is a little slow, it will give you breathing space and chance to get all your questions in order xx

Dear Marshmallow

All hospitals have their own complaints procedure and you should be able to find this information on their website.

All I can do is tell you how I went about raising my concerns with the hospital that treated my late fiancé.

In the weeks immediately following his death, I put to paper a detailed account of everything that happened during my final days with him at the hospital; dates, times, personnel. I spoke at length with my GP, and nurses and experts at McMillan Cancer Support, online, over the phone and even face to face by popping in to my local hospital and visiting the McMillan desk on site. I obtained further advice and support from PALS at a different hospital because in some areas, PALS also provide complaint handling for the hospital they are based at and therefore are not always independent. Everyone I spoke to understood my concerns and gave me encouragement and strength to raise them with the hospital.

I was advised not to speak or write to any of the doctors or consultants involved in my partner’s care but to raise my concerns in writing to the hospital trust or to the Chief Executive of the hospital. Again, you should be able to find these details on the hospital’s website.

At the same time I was of course also grieving the loss of my partner and having to deal with various administrative matters relating to his death. I was advised by the PALS office I had previously consulted to also copy my letter to the PHSO due to the approaching time limit (1 year). The PHSO will not take on your complaint until you have completed the complaint process with the hospital but you will get a case reference number.

The response I received from the Chief Executive of the hospital was wholly inadequate on a scale that caused a great deal of upset and I set about drafting my reply. But as progress was made in my second letter I had growing concerns about the medical records that had been sent. This prompted telephone calls to the hospital’s Records Department and numerous emails back and forth, which culminated in finally receiving a copy of the Clinical Notes Journal which included hundreds of pages missing from the first set of records sent to me. I learned new and significant details about the care provided to my partner and also gained an insight into the approach to documentation taken by the hospital, bringing forth new areas of concern. It was a monumental and emotional task reading and rereading these new clinical notes and collating all the relevant information. I worked on this day and night for 6 months through to late New Year’s Eve 2021 to complete and send my second letter to the hospital. I did not receive a final response to my letter until some 15 months later. The complaint has been one of the most difficult and emotional things I have ever done in my life and when I began the process I expected the hospital to properly re-examine and genuinely reflect upon the decisions made, taking into account all the circumstances known to both sides. I never ever imagined for a moment that in their responses they would dispute the very circumstances themselves. Nor did I ever foresee that I could be made to feel even worse for speaking out and doing the right thing.

It is 223 weeks since my partner died and I still shed tears multiple times a day and struggle with intense debilitating feelings of grief, deep sadness and despair but I am also filled with immense anger and bitterness at the hospital who have gaslighted me in my grief but I owe it to my partner’s memory and to myself to stand up to the injustices that occurred and somehow I have come this far.

If something didn’t feel right with your loved one’s care you need a chance to put your concerns to the hospital trust or the Chief Executive; only they can investigate and explain what decisions were made and why.

I hope this helps. I wish you all the very best.

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Thankyou so much for this helpful advice and sharing what you have gone through. I am dismayed at the response you have had. My husband was scared of going into the hospital . He had been in there before and the neglect was terrible. We had no option as he developed hospital acquired pneumonia in this filthy place. I have photos as evidence . I am so broken but determined to expose what they did. Even if it kills me in the process

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