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Post by champagneprince on Apr 11, 2019 15:17:37 GMT 1
So very sad to hear such terrible news. My heart goes out to you. Signed. Thanks, will also send you a PM
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Post by champagneprince on Apr 11, 2019 15:22:37 GMT 1
Signed - very sad to hear. Thanks, much appreciated. I'm a firm believer that if you feel passionate about something you should get off your backside and try and do something about it and therefore I am! It won't be easy but it can be done with the right amount of resolve and determination.
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Post by champagneprince on Apr 11, 2019 15:29:11 GMT 1
Signed your petition. Brought a tear to my eye especially as my Dad faces up to his own battle 25 years on from losing my Mum to the dreaded disease pre-mobile phones day remember making the call to my sister in Australia to say you have to get on a plane now as Mums condition deteriorated rapidly needless to say she returns from Australia again in the next few days. Thanks to the hard work of the Chairman, Manager and Players of our football club we are able to maintain some normality in our lives at difficult times win, lose or draw it gives us something else to talk about. Let's get behind our team for the rest of the season COYB. Many thanks. Very sad for your dad and your family. Your dad will have seen your mum go through this and will have visions of what's likely to unfold but please let him know that things have moved on a lot in 25 years. Whilst the treatment is still pretty harrowing it's a world away from where it was and if you're attending the Lingen Davies ward in Shrewsbury then the facilities and staff are excellent. If you need any help or advice, or even if your dad wants to, then pm me and I'll give you my number.
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Post by Deleted on Apr 11, 2019 19:53:24 GMT 1
I was walking across the fields this afternoon and deep in thought my mind kept on coming back to your story. Having, until recently spent 40 years working in health and social care, for a time I worked on clinical commissioning, on two specific disciplines, cancer and end of life care. My clinical lead was passionate about bringing in local improvements in both clinical areas and I know he would have been shocked if he was to come across your story.
The thing is, have you raised this case with your local clinical commissioning group? I was also thinking, is there a local patient user group who you could speak to? We had a very proactive patient user partnership who provided a lot of input into the redesign of our local services. There may be an opportunity, at least at a local level to ensure that future patients, families, carers do not have to go through the same experience.
I know that this is no real comfort but I do hope that changes can be made so that patients can be treated with care and dignity at all times and that they can return to the peace and comfort of their own homes without undue delay.
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Post by champagneprince on Apr 11, 2019 23:19:35 GMT 1
I was walking across the fields this afternoon and deep in thought my mind kept on coming back to your story. Having, until recently spent 40 years working in health and social care, for a time I worked on clinical commissioning, on two specific disciplines, cancer and end of life care. My clinical lead was passionate about bringing in local improvements in both clinical areas and I know he would have been shocked if he was to come across your story. The thing is, have you raised this case with your local clinical commissioning group? I was also thinking, is there a local patient user group who you could speak to? We had a very proactive patient user partnership who provided a lot of input into the redesign of our local services. There may be an opportunity, at least at a local level to ensure that future patients, families, carers do not have to go through the same experience. I know that this is no real comfort but I do hope that changes can be made so that patients can be treated with care and dignity at all times and that they can return to the peace and comfort of their own homes without undue delay. I have no idea what a local clinical commissioning group is or even how to speak to them. There is an official complaint against the transport company which is currently in its 60 day window and that's the formal way to deal with these issues (or so I believe) One thing I am not is shy about putting myself forward and will quite happily, formally or informally, speak to people...and battle if needed...to get a result. If they want me to do anything, then I will, just point them my way. After all, the NHS needs to change, so I say, let's get on with it. And thanks for that info, much appreciated.
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Post by champagneprince on Apr 12, 2019 0:06:43 GMT 1
I have signed. As others have said yours is a very sad story and puts everything else into perspective. Nothing is as important as personal happiness and health. You are bound to go through some difficult times but hopefully will be able to come through. Your wife must have been a very courageous woman to go through all that treatment and you must have been a great comfort to her. Take care of yourself. Thank you Sshrew, She was extremely courageous, even her clinical specialist commented on it (her text to me below on hearing of her death) Denise was so courageous in many ways. She kept so positive, even when one treatment after another failed for her. She kept her sense of humour all the way through and I don't think I've ever met someone who has touched me so much. Denise saw this person so often that she became a friend to her. An exceptional nurse, in an extremely difficult job. The NHS is lucky enough to have somebody of her calibre working for them. I have nothing but praise for her or anyone working at the Lingen Davies Centre in Shrewsbury. Denise, would do all the charity stuff like the midnight walks etc, even though at times she came home regretting it (spinal cancer, the walking caused a lot of pain in her back at times, but she'd do it anyway). For the Severn Hospice at Christmas she'd make snowmen stuffed with rice and they'd flog them on the charity stalls. Christmas 2017, I got home from work only to find the kitchen full of the bloody things! Not only that, she'd go out to local shops to persuade them to part with the stock she needed for nothing! So, yep, she is a big loss and what happened to her in A&E that night was very tough, especially as we'd pretty much followed the hospice dosage instructions to the letter (it's pretty tough caring for someone full time when you don't 'medically' really know what you're doing - you tend to check everything twice and do everything by the book), so it felt like all the good work we'd done so diligently was being thrown out of the window in the very place where it should've been priority and I can't tell you how frustrating and worrying that was.
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Post by Deleted on Apr 12, 2019 6:03:57 GMT 1
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Post by keithb123 on Apr 12, 2019 10:37:03 GMT 1
Sincere condolences. I have signed the petition and shared the link with my FB friends
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Post by champagneprince on Apr 12, 2019 19:21:03 GMT 1
Now that is very interesting. I can't say I've seen the media campaign to attract people, but given this may have been over the last six months when things have been tough and I wouldn't have noticed anyway, I guess it would've been easy to miss. I definitely would like to be involved in this and on Monday will make the enquiries. Let's see where it goes, cheers for that!
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Post by champagneprince on Apr 12, 2019 19:33:10 GMT 1
Sincere condolences. I have signed the petition and shared the link with my FB friends Thank you Keith, and especially for sharing with your FB friends. Sharing is what will get it moving around the country. Anything anyone can do would be greatly appreciated
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Post by Deleted on Apr 13, 2019 13:10:57 GMT 1
Very sorry to hear this news.
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Post by lenny on Apr 13, 2019 15:19:57 GMT 1
Such an eloquently told, heart-breaking tale. Beyond moving and I have nothing but admiration for the openness and strength that you show, and from what you say it sounds like it was in exactly the same vein as your wife.
Relating to your petition, we had some similar issues with waiting for transport when my grandmother was waiting to be discharged from hospital. Although she had not actually been discharged, she was in hospital when she did not need to be because they couldn’t arrange transport suitably, despite her being a priority patient in the palliative phase.
There were also all kinds of logistical issues with waiting for oxygen and a bed to be delivered to her home - which had I not happened to be around and wait in with my grandfather (who has Alzheimer’s) I don’t know how my parents would have been able to sort out given the short notice provided; my mum (a nurse) would have had to simply not show up at work. She was moved to a care home, and we were initially given warning that this would happen a couple of hours beforehand. This was incredibly stressful for her, and was subsequently amended to be the next day as the company hadn’t made the right arrangements to transport the oxygen.
The upshot is that there was a very stressful period for my grandmother in the final months of her life (she passed away at the end of my first week in my job down in London). She was on the ward where my mum works, and I have a good friend who works with liaising with transport and departures so I know the incredible quality, care and heart that the staff possess and the effort that they go to in order to provide a quality service. What was beyond question, though, was that the overall process could have been streamlined and shows the cracks that have appeared within an incredible organisation.
Anyway I apologise for hijacking your thread! Long story short, I think it is a fantastic cause and I am more than happy to support you in anyway way that I can, starting with backing the petition.
Matt
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Post by champagneprince on Apr 13, 2019 16:30:14 GMT 1
Such an eloquently told, heart-breaking tale. Beyond moving and I have nothing but admiration for the openness and strength that you show, and from what you say it sounds like it was in exactly the same vein as your wife. Relating to your petition, we had some similar issues with waiting for transport when my grandmother was waiting to be discharged from hospital. Although she had not actually been discharged, she was in hospital when she did not need to be because they couldn’t arrange transport suitably, despite her being a priority patient in the palliative phase. There were also all kinds of logistical issues with waiting for oxygen and a bed to be delivered to her home - which had I not happened to be around and wait in with my grandfather (who has Alzheimer’s) I don’t know how my parents would have been able to sort out given the short notice provided; my mum (a nurse) would have had to simply not show up at work. She was moved to a care home, and we were initially given warning that this would happen a couple of hours beforehand. This was incredibly stressful for her, and was subsequently amended to be the next day as the company hadn’t made the right arrangements to transport the oxygen. The upshot is that there was a very stressful period for my grandmother in the final months of her life (she passed away at the end of my first week in my job down in London). She was on the ward where my mum works, and I have a good friend who works with liaising with transport and departures so I know the incredible quality, care and heart that the staff possess and the effort that they go to in order to provide a quality service. What was beyond question, though, was that the overall process could have been streamlined and shows the cracks that have appeared within an incredible organisation. Anyway I apologise for hijacking your thread! Long story short, I think it is a fantastic cause and I am more than happy to support you in anyway way that I can, starting with backing the petition. Matt Thank you Lenny (Matt). You're definitely not hijacking, in fact your own story adds to the whole point of the petition - getting things done so others don't have to go through the same, sorry, experience. The first objective is to get it heard, ultimately this is an issue that could happen to every single one of us at some point in our lives and when it happens, as you have found out, it's upsetting, frustrating and damaging. Please support the petition everyone and share as much as you can in social media land. Thanks again to all those who have and to you Matt, RIP your Grandmother, she went through a horrible, needless experience and my heart goes out to you.
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Post by champagneprince on Apr 13, 2019 16:45:16 GMT 1
Very sorry to hear this news. Thank you Loyalshrew. If this ever happens to you with perhaps your own loved one and you know they are only a few weeks away from death, weakening daily both in body and mind, you will just want to get that loved one back into the comfort of their home as soon as possible. An unplanned trip to hospital isn't meant to add to all the existing frustrations. Not knowing when specialist transport is going to arrive, feeling powerless and worried that your loved one might actually die there on a trolley in a side ward, is not a feeling I would wish on anyone.
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Post by vixenshrew on Apr 14, 2019 18:04:04 GMT 1
So sorry to hear of your loss. I have signed your petition. Unfortunately this has been going on for years. My late partner died of cancer 7 years ago and we witnessed exactly this with other cancer patients who did not have transport. His care varied from being brilliant to appalling at the NHS. It's a horrible time for you now and I'm happy to share how I got through this with you and/ or I'm a very good listener. Just pm me if it will help.
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Post by champagneprince on Apr 14, 2019 18:56:13 GMT 1
So sorry to hear of your loss. I have signed your petition. Unfortunately this has been going on for years. My late partner died of cancer 7 years ago and we witnessed exactly this with other cancer patients who did not have transport. His care varied from being brilliant to appalling at the NHS. It's a horrible time for you now and I'm happy to share how I got through this with you and/ or I'm a very good listener. Just pm me if it will help. Thank you Vixenshrew. I will pm you tonight. I've just come back from delivering 200 petition leaflets and my legs are knackered (unfitness!) so I need a drink and some tea. Yes, over a seven year period with my wife's cancer treatment I have also seen the good and bad of NHS treatment. I try to apply an objective approach to it i.e weighing up the good points and the bad points. Perhaps the worst experiences we had were (other than the petition case) basically having to 'kick off' in 2014 as my wife was clearly being neglected, stuck in a hospital bed with breathing difficulties. Turns out they had tried to drain her lung and not only used the wrong equipment but actually punctured the wrong lung. This resulted in her good lung collapsing and her bad (cancerous) lung doing the breathing. She was blue in the face and could barely talk when I came to visit. That was the day, at the age of 47, that I found I had a kill instinct in me. It's something I never knew I had, but apparently everyone has it, it just needs the right triggers to pull it out. It has surfaced a few times since then (all to do with my wife's healthcare), like a bottle of pop being shaken and starting to bubble. Not nice. Not something that's normally part of me. We did put a complaint in about it, but it wasn't handled correctly, and we were told to put in a complaint about the complaints department (you couldn't make it up). It got to a stage where we just got so sick of it, so much so that I can't even remember what the final outcome was! Next day, she was rushed to Stoke where they did the job properly and four days later her lung drain was, at last, running clear and she had gone back to her normal colour and was breathing well. But we've had lots of good experiences too. Some of those consultants are simply geniuses. Some of the nursing staff incredible, with (on a scale) the majority being 'good' although a small minority shouldn't even be in the profession IMO. With regards to the petition incident, the A&E staff involved with my wife were excellent, it's just the system was appalling.
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Post by Exkeeper on Apr 14, 2019 19:07:50 GMT 1
I hope you fulfil your objective and have just signed the petition. I admire your courage.
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Post by champagneprince on Apr 14, 2019 21:39:23 GMT 1
I hope you fulfil your objective and have just signed the petition. I admire your courage. Thanks, much appreciated, but no courage here. Most of the time over the last 7 years I've been scared stiff of everything. A million scenarios going through my head of 'what could be', with the last 6 months being hell in all truth. I will never know how my Mrs went through what she did, how she got up every day, put one foot in front of the other and dealt with some pretty terrible symptoms, mental anguish, fatigue, pain and all the confusions of healthcare demands like tablets, appointments and just being with other really poorly people , in the Lingen Davies centre, in the hospice, at mindfulness sessions, all going through their own brave battles. Many a time I said to myself 'I could never do this' when I watched as the nurse put another drip into her arm. I still don't know how I'd react now if somebody told me it was my turn for cancer treatment. Run away probably. The hair loss, much worse for a woman (personally, I always thought she looked great bald, but she hated it), going to choose a wig with her (still the most surreal thing I've ever done), combing her thinning hair 'out' until there was none left and kissing the top of her head saying 'all done' and a few years later on the second time 'all done again'. Absolutely soul destroying for her. But she battled on. Given that she went through all that, and plenty more, then nearly choked to the death on the living floor at home, my heart sank when the brilliant paramedics said she should go to hospital for further checks. I just knew in my heart, some sort of calamity would befall us and of course it did....needlessly. I hope nobody else has to go through the same. Cancer is tough enough to handle on its own.
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Post by Exkeeper on Apr 15, 2019 0:04:24 GMT 1
You are left with memories of a very brave lady and hopefully the knowledge that you did your very best for her in a hopeless situation.
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