'Not a single word of kindness': A letter to a hospital

I was very interested today to hear of a report from Macmillan which reveals cancer patients in the UK aren't treated with the greatest of compassion and are denied "a good death.

As I approach the second anniversary of losing our beloved Neil, I still carry the trauma of what happened in his last days in Wolverhampton's New Cross Hospital. 

Compassion was sorely lacking. 

I was commissioned to write about this some months ago for a national newspaper as a case study in a bigger piece about NHS failings. That piece never saw the light of day. So here I am getting it out there.  

My husband Neil died in May 2012 of melanoma, six weeks after his 44th birthday.

The hospital concerned has told us they are “deeply sorry” for some aspects of Neil’s care and in response to others, an action plan would be developed. In short, things were to change because of our experience and my complaint. I felt compelled to tell our story as too often now I’m being told it’s typical and I wanted to help prevent similar distress for other families in the future. Today's report from Macmillan tells us what too many people already knew.

Ours is not a headline-grabbing case of massive negligence, rather, to me and my family, a heartbreaking account of how so many basic things can be overlooked.

In writing a complaint letter to the hospital, I wanted to call for better training for staff on general medical wards so that other families are less likely to suffer as we did. To be honest with you I also want to tell this story as it hurts so much and I'm still getting flashbacks. 

I asked management to explain what training staff in general wards underwent to meet the needs of terminally ill patients and urged them to consider investing in increased/improved training.


I received five pages of apology.  


These are points, condensed but also added to a little here, that I raised:

Days before Neil died: 

  • Despite being admitted because of dehydration, he was refused a drink of water as we waited in the Emergency Assessment unit. He was given a drip sometime after we arrived (I don't recall how long this was, but certainly more than an hour) only to have it removed to stop porters, who broke into an argument in front of us, refusing to take him for an X ray. They rowed about this between themselves and didn't say or do anything to acknowledge our presence as the subject of their disagreement over whether you could take someone to an X ray with a drip attached. I watched them in silence. It would be up to a doctor whether Neil could have a drink. Every time I asked when the doctor would see Neil I was told: "Not a clue." Five hours later, at around 9pm, we saw one. I clearly remember wondering what the point of being there was and to this day, I have no answer.

  • Once he was on the ward, and this is an image that haunts me, Neil lay motionless half way down his bed, his face and clothes smeared with food, while plates piled up still stacked with uneaten meals on his over-bed table. I hated the way the nurses referred to Neil, for example when I  asked why he wasn't eating, I was told: 'He likes his independence too much.' To me, hearing a young man  of such fierce intellect spoken of in such patronising terms, as if he was a wilful elderly patient or child, was hard to bear. I pulled the curtains around his bed to stop other patients staring at him. I wanted him to have privacy and dignity, both of which were evidently lacking. A nurse immediately drew them back.


  • We were laughed at when we attempted to report his Kindle missing from his bedside and asked if it could have been stolen. In everything our family has gone through in recent months, the memory of a nurse laughing at me while my husband lay dying is one of the most painful. I couldn’t believe how nurses were interacting with me, with a sort of ‘enforced jollity’ hours after being told my husband was so desperately ill. I started sobbing that I wanted to take him home that minute. I'll let you imagine how we all felt that Neil's Kindle, a thoughtful birthday present from some of our friends, had been taken from his bedside in his last days. Later, as I aired my concerns about Neil's care to a senior member of staff, he admonished me for bringing in valuables. 


  • Neil was refused a wash and told he could have a shower in the morning. In the morning he didn't get a shower as nurses didn't have time. Me and one of my 13-year-old daughters spent an hour with Neil who could barely stand, in the ward bathroom, we were in a very distressed state but wanted to do our best for Neil to fulfil a basic need that had been refused. My daughter insisted she wanted to help, I was inconsolable that she would have this troubling episode as a memory so close to losing her dad.
  • Later a nurse came and said that they would have given him a wash but they were on changeover. If someone had explained this to me in a professional and caring manner then maybe it wouldn’t have been such a distressing turn of events but they didn’t. Instead I had been dismissed and made to feel unreasonable for requesting the most basic care.


  • A nurse in the emergency admissions unit met our repeated questions about what was happening with the answer 'not a clue'. Days later we requested a wheelchair so we could take him out of bed, the response was “Who’s Neil?”

  • He fell from his bed and no warnings about his limited mobility or danger of falling were displayed. What do you think I would like to say about that?



  • On another visit we were told that nursing staff had been unable to give Neil his prescribed medication as his notes couldn’t be found. As one of those medicines was morphine to control his pain, this was another cause of concern.


  • Some days (most I think in this short period, though my memory is blurred) I wasn't allowed to be with him at any other time than in visiting times and should have been advised of flexible times. This hurts so much, I think so often of that lost time with him and how I wasn't there just to hold his hand. I did ask for longer with him, out of normal visiting times but wasn't allowed before his last two days when we were told he would die in the ambulance if he was moved to St Giles Hospice.

  • With no staff in view, after giving him a wash, I said goodbye one night to Neil, an elderly man two beds down started shouting at me for help in finding something. I said I was sorry I didn’t work there. He became very angry and shouted at me some more. I was upset there were no nurses to look after someone else who was now berating me for not doing their job – an utterly chaotic and distressing experience.

  • When I took up all the above points with a ward manager, I was told there were patients “much more ill than Neil.”

  • Another scan we were told would be booked ASAP never happened. Four days later a forgotten request was found in Neil’s notes, despite assurances when I attempted to check on progress that efforts were being made to move him up the list. By this time, we were told there was no point in having more tests, Neil's condition had deteriorated to the extent he was going to die soon. I remember a conversation with a junior doctor I hadn't met before around this time whose words went along the lines of "I am sorry your husband has cancer." Baffled by his response to my questions, I replied I'd known a while.  

  • A palliative care team wasn’t informed of Neil’s presence in the hospital until 48 hours before he died, I felt so very strongly about the nurses’ dismissive attitude and the fact that we weren’t afforded a single word of kindness before Neil was transferred to the specialist cancer ward where he died after spending five days on a general medical ward.

  • Raising the point of how we were spoken to, I said in my letter to the hospital:  “You may not find this a significant complaint but I can assure you that faced with the anguish of Neil’s condition such dismissive treatment from an overworked nurse cut like a knife. In hindsight, knowing he had days to live, I am baffled how anyone working in such an environment could find this communication acceptable.” 

  • During our five-hour wait to see the doctor on the night of Neil’s admission, an elderly woman patient came and took Neil’s blanket, accusing him of stealing it from her. There was not a member of staff in sight to come to our aid in the face of a clearly agitated woman and I was alarmed by how she was scaring Neil. I told her to go away and leave us alone.


  • When Neil returned from x-ray after being admitted, I couldn’t find his drip. I found a nurse to tell and she said she had taken it off. I was worried about how long he had been without it but got no further explanation. I asked for it to be refitted and some 20 minutes later it was. Had I not have left Neil to go and find a nurse and request the drip was returned, I dread to think when this would have been refitted. I considered keeping a patient hydrated a basic part of care and was upset that this was not being achieved – especially when this was the reason Neil had been sent to hospital.


  • It is a huge source of grief to me that Neil’s last days were filled with such chaos. I feel so much grief that we didn’t continue to look after Neil at home instead of him enduring what we did.



My complaint:



I wrote seven pages of complaint to New Cross Hospital, Wolverhampton around a month after Neil died when I could find the words. After a month my complaint hadn't been acknowledged so I rang and was told the letter must have got lost in the post. Later I was told more time was needed. The final response which came two months after I made it was five pages of apology which sought to reassure me my complaints were taken seriously and improved training/communication was under way. Reading the answer to the points I raised sent me into a panic attack - the second since I was given the news Neil would die within 48 hours.


The hospital’s response: (Signed by Kevin Stringer, Chief Financial Officer on behalf of David Loughton CBE, Chief Exec Royal Wolverhampton Hospitals NHS Trust )

An investigation was carried out.

On our care in EAU:


They acknowledge the way we were spoken to was unacceptable and apologise. They outline how requests for information should be met with respect and courtesy. They say we should have been treated with more sensitivity.

They say my raising questions about training was appropriate and outline the training they undertake and add that the EAU isn’t an ideal place for terminally ill patients. They say staff now work closely with the palliative care team to provide necessary support. (I think but can’t be sure this means a result of my letter which is a comfort.)

The missing scan request



They say it is not clear if the request was ever received.

Our experience with the drip



They say fluids should not have been stopped and are ‘deeply sorry’ for what happened, staff have been spoken to.

They say our experience was below standard and my concerns are being discussed further at a team governance (quality) meeting in order to ensure protocols are in place to prevent a recurrence.  

Neil’s fall:



They are “extremely sorry” he fell while in their care.
They apologise that no advisory signs were displayed over Neil’s bed.
All staff have been reminded of the importance of such signs

Visiting times



They apologise these weren’t extended for me

Lack of basic care and hygiene

They apologise that the appropriate care and attention required was lacking. All staff have been reminded of the importance of undertaking comfort rounds

They apologise that staff reaction to a request for a wash led me to take matters into my own hands

Loss of kindle



They apologised for the poor experience we experienced

Poor communication



They are sorry I felt we weren’t given enough information and also wish to apologise that I felt staff didn’t offer appropriate support at this extremely difficult time and at times they behaved inappropriately, adding to my distress.

My experience will be shared with relevant staff at team meetings and directorate governance forums. An action plan will be developed in response to my experiences.


Conclusion:



They were very concerned to read of our experiences.

“Please let me say how sorry I am for the additional upset caused to you and your family at this time. I hope you are reassured that your comments have been taken on board by the nursing team and group managers.”


Important note:





The care Neil received in the specialist Deansley cancer ward at New Cross was amazing from lovely, lovely people. He was there for five weeks in one go at one time, and he eventually died there. St Giles Hospice were also phenomenal through their home care and counselling services and a bed was ready for him, but he never made it. Perhaps if the palliative care team at New Cross had been told earlier we were there, who knows, he may have. 

Macmillan blew us away, helping Neil walk so he could accompany me down the aisle at our wedding. A happier memory is how the nurses and doctors at Deansley stood and clapped as he inched his way down the corridor with a walking frame after weeks of not being allowed to move and losing all mobility, thanks to his remarkable determination and the unswerving commitment and patience of the Macmillan physios. His consultant Dr Simon Grummett never treated Neil with anything less than complete respect, care and dignity, his support for us and his hopes of helping Neil live longer through innovative treatment brought us great comfort.


  

69 comments:

  1. I'm glad some good has come of your appalling experience. Yes, staff are stretched, but basic human kindness and manners should be a given. I'm sorry you had to go through this in addition to losing Neil. Sending you lots of love xx

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  2. I will never understand this - surely nurses and doctors don't need 'training' to simply be kind and show compassion, and to treat patients and their families with respect? I haven't had any medical training but would, I hope, show sensitivity and kindness to anyone dealing with such a terrible situation. Hugs to you and your family, Linda. x

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  3. This is appalling. I'm angry on you and your family's behalf. You were all going through enough without having this basic lack of care and respect to deal with too. A kind word goes such a long way. I'm so sorry you had to endure this. I hope by posting this it will make a difference. If people don't speak out, as you have, then few of us would have any idea that situations like this occur and nothing will change. Wishing you lots of love. xx

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    1. Thank you Rosie, we really are making massive progress but the anger this caused within me has festered and the flashbacks are vile. Thanks for taking the time to comment and send love, it is so appreciated x

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  4. Thank you Sandy and anon for saying that -- anon (is that you Claire?) those are my sentiments exactly. I am someone who always wants to see the good in others, I couldn't believe it. I thought where training was needed in things like you shouldn't be being all 'jolly' and pulling the curtains back as if someone who is days from dying should be on top of the world.

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  5. How awful that you and your daughters had to deal with these issues at a time that was already so distressing. I had similar problems when my Dad was dying in hospital, nobody took responsibility for anything and we had to aggressively fight for everything that (we felt) should have been standard levels of care. We eventually had Dad moved to a smaller hospital where the care was excellent and where he spent his final days with dignity.
    I'm so sorry to had to go through all of this Linda xx

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    1. Thank you Jean for commenting and sharing something of your experience, isn't it terrible just how typical this is.

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  6. I still have flashbacks after nearly dying in A&E so I can empathise at least a little. Reading all you went through makes me so angry and upset for you all. The lack of care, respect and dignity shown your family made a horrendous time even worse and it's not like you were asking for unreasonable special treatment.

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    1. Thank you Fiona for your comment and your support, I'm sorry to hear you've had a very difficult time, much love to you.

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  7. I am so sorry for what you have had to endure. Unfortunately it doesn't surprise me. My Grandma has stage 4 cancer and her treatment throughout has been appalling. She was even overdosed with chemotherapy on her second visit. So many times she has been reduced to tears because of the apparent lack of care from staff.

    I used to work on a dementia ward and only ever saw patients being treated with respect and care. The staff on the ward were fabulous and I am proud to have worked with them.

    It is so disappointing that end of life care cannot be compassionate.

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    1. Thank you for commenting so thoughtfully, I am so very sorry to hear of what you and your family are going through with your Grandma. I have spoken to more people who have such sad and shocking stories, I'm pleased to see Macmillan raising this. Big hugs to you.

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  9. I've been a carer on and off for over 20 years.

    Kindness takes time and that is what is often lacking, time and thought.

    My aunt had cancer and was in a small NHS hospital. I went to see her and she said she needed the toilet. I went and got a nurse and she said "I haven't got time you do it". I hadn't seen her in over 20 years I was a little girl last time I had seen her (I was in Oz she lived here)

    I told her what the nurse had said and she had tears. But I took her to the toilet and got her sorted out. She hugged me and said how much better I was than her staff.

    Because of kindness, and lack of time and thought.

    And kindness matters.

    Sometimes I think we are kinder to animals in the zoo than we are to people in hospital. And that's wrong.

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    1. Hi Kylie, thank you for commenting so thoughtfully. I am so sorry to hear about the bad memories that stay with you about your aunt's experience. you have reminded me of my brief time working as a care assistant and though I didn't get much training, I already knew kindness is a strength to be shared as often as we can xx

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  10. This is just awful, Linda. I'm so sorry your family had to receive this type of (continuous) interaction during those important days.

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    1. Thank you Nickie. It has been an important step for me to get this written.













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  11. I'm so sorry to hear you & your family had to go through that. Surely nurses do that job because they care about people? Shocking. My father died of cancer two weeks after being diagnosed. His care wasn't perfect, but it was nothing like that & we were able to stay with him which made a difference. You & Neil deserved better. Big hugs Susan x

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    1. Thank you Susan for commenting, very sorry to hear about your experience with your dad, I have no doubt that nurses care about people but in my humble opinion they are placed under a lot of pressure and systems crumble to the point that basic human decency goes out of the picture when there just aren't enough of them. I know this explains some of what I remember here, but not all. I suppose me asking for more training is a reflection of that -- on a general medical ward, staff are used to seeing patients getting better, and in our case I felt they didn't know to or consider how a terminally ill patient and his family may need a different approach.




























































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  12. When my mum had cancer at one point she was on a general ward at a hospital in Stoke-on-Trent. It was Bedlam and I was quietly haunted that her last days could be spent stripped of dignity with our grief a matter of inconvenient public display. As it was, she was to die in Katherine House hospital with the help of MacMillan in Stafford in the grounds of Mid Staffs but a world away from the under resources chaos that you experienced. People just shouldn't have to endure this. Not ever. But especially in their last days. I wish you strength and courage, Linda.

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    1. Hi Dan, thank you for commenting, I am sorry you have been through this with your mum, we spent some time at Stoke and it wasn't brilliant, Neil's dad caught a 'superbug' there when he went in for a heart op and spent much longer than he should have in there. This week someone told me about a bad experience with his mum at Stafford.

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  13. I have read this and cried. I don't know what else to write. My grandad fell out of his bed when he was in bed with lung cancer. He broke his hip when he fell out of bed and wasn't given pain relief at first because no one thought to. My mum has never got over it. The rest was shocking as well. Bless you and your family x

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  14. I am totally enraged on your behalf, Linda. I can't believe you had to go through this - as if watching a loved one dying isn't awful enough. I'm so sorry. x

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  15. Catherine via facebook3 May 2014 at 04:10

    Wow Linda - how awful. So sorry to hear Neil had such terrible care and well done to you for putting this out there xxx

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  16. This made me very angry and sad. It must have been very hard to write. Well done for being angry and complaining

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  17. Linda, I'm so sorry you and Neil and your family had to go through such awful, shitty things at the hands of people who should have been doing their absolute best to care for him. Some friends and I are having a night in to raise money for Macmillan - we're donating the money we would spend in the pub etc to them and doing some other stuff in aid of them. I'll think of you when we do xxx

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  18. Linda, that is just terrible. I am astounded that you had to go through all of that while caring for Neil. It should never happen, ever, let alone when you already had so much to deal with. I am furious for you all.

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  19. I'm truly shocked at the appalling care Neil and you and the girls received. I didn't manage to finish it, as I found it really distressing - it's in no way comparable to your situation but it triggered memories of my Leo's "care" in a London psychiatric ward 24 years ago. He was sectioned and the ward was supposed to be locked but he just walked out, unnoticed and was dead in less than an hour (by his own hand). We never had an apology from the hospital either until one was given grudgingly at the inquest when the coroner ordered them to make changes to their care regimes. I think my point is that hospitals fuck up all too frequently for a complexity of reasons, mainly down to lack of funding leading to staff shortages and poor training, which impacts badly on patients and their families. Sending you a massive, massive hug - please find the strength to keep fighting this hospital, Neil deserved so much better and so do you and the girls xxx

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  20. I am so sorry to read this and I don't know what to say. You are so right to share what has happened and maybe we can begin to change the culture where human needs are overlooked and the human being is lost in the morass of medicalisation. I hope you can begin to heal from the trauma and the flashbacks subside soon. Lots of love to you all xxxx

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  21. Oh Linda, I'm so sorry to hear of all this. I really admire you for writing about it all and for complaining to the hospital too. None of it should have happened but it's good to hear the hospital is addressing the poor treatment and has apologised. Thinking of you xx

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  22. Disgusting! That's all I can say. Love and hugs to you and the girls and as always I am round the corner if you need me anytime xxxx

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  23. That's terribly sad and how awful for you and Neil to be spending his last days like that, it's not how it should be. I spent a week in intensive care where the staff were amazing but once I was transferred to a general ward my experiences were very similar. Luckily I could get better again and leave, but sadly Neil couldn't do that, very upsetting x

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  24. I remember what it took you to write that letter. What a very horrible and distressing time xx I think about Neil often and remember all the love you had for each other and your girls xx stay strong my friend. Lots of love xx

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  25. I remember you posting about Neil in hospital and I think I said at the time how truly shocking 'care' in some hospitals can be...my mum died of cancer in the Royal Bournemouth having been matron of a hospital in Hong Kong for much of her working life. I was horrified by the indifference, lack of compassion and sheer shoddiness displayed to her and so many other patients. The distress remains with those who have had to witness it long after your loved one has gone because you wish you could have done something to make it better. I'm so sorry you're having a bad day but I'm sure there will be better days soon and you have highlighted a very important issue. xx

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  26. I'm so shocked to read this. Bit speechless, which is rare. Can see Neil as clear as day and it must be a decade since we spoke. Hope you and the girls are ok.

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  27. This is so distressing to read, Linda. No one should endure such appalling care and be treated in this way. It's a small crumb of comfort that some action has been taken to improve procedures. However, the question remains: how can such basic needs be ignored or forgotten? Surely people enter the nursing/medical profession because they care - when does that compassion disappear?

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  28. There is nothing more to add to what people have already said above Linda, except to say that by writing this and highlighting the appalling treatment Neil, you and the girls received I feel sure you have given many of us the strength to stand up and fight, if god forbid we find ourselves in a similar situation. The more we all let it be known that in Britain in this day and age it is NOT acceptable to treat human beings in this way, maybe things will get changed. I am so very sad for you and the girls Linda xxx

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  29. Hi Karen, thanks for commenting in such a thoughtful way, there's no denying this has caused untold distress, I'm happy to say we are doing much, much better these days, we have had a lot of help and support.

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  30. Oh Linda, how absolutely awful for you and for Neil and your family. I used to be a registered nurse, but I left 10 years ago, with 20 years of experience because I could see the way it was going and my protests to management were going unheard. My husband was also a 'Modern Matron' and was a whistleblower... his case was not upheld as the Trust all stuck together but he was witness to the kind of things you mention (and worse believe it or not) He now has Cancer, and we get very worried about the care he receives. So far, he has had nothing but respect, kindness and everybody doing absolutely everything they can to help. We are 4 years into his cancer journey, and I can honestly say we have never experienced what Neil had to endure. It is a very brave person that highlights when care is lacking... our story will give others the strength to stand up and be assertive when they know they are receiving less than perfect care. Bravo xxx

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    1. Hi Mandy, thank you for adding your experience here, it's really encouraging and good for me to hear about the excellent care still happening. I don't think there was one big terrible thing that happened to us, just a set of circumstances dictated by stretched resources and lack of understanding and empathy -- why would a nurse pull back a curtain in these circumstances, I just don't get it. I can well believe that there are lots of people who have experienced much much worse care than we have and my heart aches for them, this was five days. I am so sorry for all you and your husband are going through and thankful, as we were with most of Neil's care, that you are having a good experience of support and treatment. Thank you again for commenting and for your kind words. It's good for me to see that what I've written can resonate xx

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  31. Hey LInda, long time no speak. I'm sorry to heave to read this and see the appalling situation you had to deal with whilst already being in the most painful of situations. I'm glad you felt able to write this and I hope notice is taken. With love and prayers, Mich x

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    1. Hello! Thank you very much, it has helped me to write this and to see people being so supportive, a big step for me I think xx

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  32. Hi Lina, I am so sorry your family had to go through any of this, I felt so sad reading it. I hope you are all starting to mend. I can't imagine how awful this has been, on top of losing Neil X

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  33. Hi Sarah, thank you for your kind words, the pain this element of our experience caused has been rattling around my head for too long, I'm grateful to have been able to share my story now and see the kindness it has been met with.

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  34. *big hug* you're brave in posting this but also a saint, you're raising awareness that terminally ill people cannot be treated like a lower form of life and through your suffering have done what you can to ensure it doesn't happen to others. Reading "sorry" angers me but then I think they can't turn back time. But hopefully won't happen to others.

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  35. Dreadful Linda. I think you raise issues here for many.
    Whilst there is much to praise in our NHS we mustn't be afraid to speak up about the faults - many of which can't just be blamed on lack of staff. Dignity and respect for patients should be the most basic element of nursing care - If it's not - something is very, very wrong and it mustn't continue.

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  36. Oh Linda, what a horrible experience for your all. It's a terrible state of affairs when people need to be trained and reminded of compassion. Much love to you & the girls x

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    1. Thank you for sending your love and I agree with you, we all expect more I think.

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  37. Shocking treatment and well expressed in your blog, Linda. The response you received to your complaint is woefully inadequate, just standard organisational bollocks really. Neil deserved better. As you did too. Love to you and your family.

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  38. Hi Tony, loving the 'standard organisational bollocks' line -- thank you! Really appreciate you taking the time to read what I've written, I very much admire your strength.

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  39. Lovely Linda. I waited to read this as I knew it would be hard and wanted to give it the full time and attention it deserves. I am so so sorry that you and Neil and your gorgeous girls had to go through this. Having my own 13 year old now, reading about you having to shower him with one of yours just broke my heart. Your letter was brave and honest and fair. Small things can make such a difference and it's scary that they are missed. I know NHS staff are under pressure, and as you say, the majority are kind, and respectful and do the best they can under the circumstances. But your experience shows that more training is needed when patients are so so poorly. And families need to be listened too and cared for too.
    Lots of love, and I hope your story leads to change in the places where it is needed.
    Hugs, Jobo and the monkeys xxx

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    1. Thanks Jo, I have lost sight of how damning some of these details are, it has been a painful blur for me for ages, since posting this I can feel some of my pain easing as people share their experiences or offer words of kindness to let me know it really wasn't ok, I feel that getting on as I have has diminished this in my memory and am still caught out by flashbacks, thanks for your lovely thoughts and hugs xx

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  40. You are absolutely right to be angry - I'm so so sorry that you had this terrible experience at such a time, and I hope that your letter (and perhaps a national piece as well) will at least prevent the same thing happening to someone else, even if that's small consolation.

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  41. It is so very sad and frustrating to read this and equally it's a relief to hear through you and some of the comments that good, compassionate care is still a part of the NHS. It always seems trite to say that stretched resources are partly to blame but I think that is the case: lack of communication, a loss of continuity of care and many staff on different rotas lead to individual employees struggling to cope, not taking responsibility for the actions and people like Neil end up suffering as the system fails them.
    I am so very sorry, Linda, and I hope things will change and not just be brushed under the carpet. It doesn't have to be like this - proper palliative care, performed with dignity and compassion, can make a death so much easier on those left behind.

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    1. Thank you Trish, for too long I have been so blinkered by our experience that I struggled to acknowledge some of the fantastic elements of the NHS but there were plenty, the palliative care team was exemplary.

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  42. Linda, this breaks my heart. I've just read your post through tears at what you and your family have been put through. I will never understand anyone entering a nursing profession if they cannot show compassion and kindness to another human being, sod the stress of the job or the staff issues. This shouldn't happen to anyone, ever. Although my experience bears no comparison to yours, I too have written a letter of complaint. I was encouraged to speak out by a healthcare professional after a major op. I am still shocked by what I experienced but to hear about your treatment beggars belief. I am truly sorry that you and your children were subjected to this appalling lack of care. Your husband deserved so much more. Thank goodness that he had such a loving family around him. I hope you eventually find some peace and that your words make a difference in the future. Much love to you all, Heidi xxxx

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    1. Thank you for taking the time to comment at such length and so thoughtfully. A lady I know who used to be a nurse told me today that 'care' as a nurse means something different to how I may view 'care' -- she said you can't teach empathy, and that 'care' means giving medication etc. I do remember working as a care assistant and while I may not have excelled at some parts of the job, I was always commended for a natural appearing caring nature, putting people at ease and so on, I'm not trying to claim some great skill but I was there for Neil and feel I let him down. I also remember the on -call doctor giving me and my mother in law a big hug as he said Neil would have to go to hospital, he obviously felt for us, but it was too much to expect this to continue in hospital. Thanks again, sorry I've gone off on one a bit!

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  43. You go off on one as much as you like! ; ) I love the fact that the on-call doctor gave you a hug, just what's needed sometimes..a genuine human response in deeply upsetting circumstances can make such a difference. Don't ever feel you let Neil down, the fact that you were there must have been hugely comforting. xxxx

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  46. Sorry I posted twice! Just wanted to add, I still think the NHS is brilliant and there are amazing doctors & nurses etc doing a great job (we've met many with our youngest son's treatment as a baby) but when things go drastically wrong, things need to be addressed and put right. Well done for speaking out xxxx

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  49. I've been meaning to comment on this for ages, Linda, but I just couldn't find the words.

    When my grandfather died of cancer in the late 90s, we had very similar experiences to the ones you've written about here, and similar ones again when Terry was in hospital with kidney failure in 2003-5. So much of this is horribly familiar, and I'm just horrified to know this kind of thing is still happening, and that you, Neil and the girls had to deal with it: it just breaks my heart. I remember when Terry was ill, I had all kinds of plans to write letters and make complaints, but I somehow never did, and I regret that now: I'm so proud of you for writing this, and for all you've been doing to raise awareness, because it's so, so important. Almost every time I've had reason to be visit someone in hospital, I've been astounded by the rudeness and lack of compassion from healthcare staff: I think it's easy to blame lack of resources, and I'm not saying that isn't an issue, but it's very hard to understand how people can lack basic human decency, and terrifying to know that it seems to be the norm in some sectors of the NHS.

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  50. Hi Amber, thank you so much for commenting as you have and adding your experience, I think it can be so difficult for anyone to actually take in what is happening, we know what we expect of people in caring professions and what we hope care will be like. To be confronted by this reality is shocking and only adds to the pain. To see a report out as it is now from the Royal College of Physicians that problems are widespread makes me feel better knowing our experience has been listened to, I agree with every word you have said Amber, thank you

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  51. Oh Linda, what a truly shit experience for you all. Neither you, Neil or anyone for that matter should ever be treated in such a manner, especially in those final precious days.
    I can only hope that by highlighting the experiences, others maybe spared from such indignities.
    I do hope the 'proper' authorities do more that talk to staff, showing respect and compassion are vital for both the patient and their family.
    The final moments with our loved ones should never result in such memories, I do hope in time the flashbacks grow fewer.

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  52. Thank you Amanda, apparently the hospital would like me to go back and see how things have changed now, it has certainly helped me to share this story and if I go back it will be to help make sure other families can at least see the hospital says things have changed. . .

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  53. Hi Linda
    My heart goes out to you and your family. It must have been an awful and distressing experience. I'm afraid I don't have any knowledgeable words of comfort on this situation so I will just say that you and your family are in my thoughts and prayers.
    Nadine

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  54. That is very kind of you Nadine, thank you so much for taking the time and trouble to say that.

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  55. Hi Linda, sad to report nothings changed.My family experienced exactly the same treatment at new cross in August when my dad died.

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