I haven't posted for a while but been busy with OCTOPUS trial, which in the end didn't suit me.
I just wanted to ask you all a very important question. Where would you wish to spend your end of life care? Would you rather be at home or being cared for in a hospice? I ask because our local Hospice Sue Ryder Nettlebed, is planning to close in the next eighteen months to two years. They say they are selling their beautiful Jacobean style building which stands in 27 acres at Nettlebed near Henley-On- Thames. They have planning permission to convert the building into several luxury flats and probably build luxury homes in the beautiful gardens. How much money do you think that will bring in!
They are planning to provide more one to one care in the community which according to them is what 70 percent of people want today after conducting their recent survey. Who are these people? I have spoken to a considerable number of people about this issue whilst conducting my own petitions and surveys and there wasn't a single one who agreed with them.
I use the facilities of this Hospice every week. The staff and volunteers are wonderful and have given me so much confidence to go forward and accept what this dreadful disease has throwing at me and my family. I was content in my end of life care plan which would be spent at Nettlebed, where so many of my friends have passed away, pain free with peace and dignity. I now wish I had never heard of Sue Ryder because I feel they have offered with one hand and taken away with the other. My plans have been shattered and once again I am very frightened about the future.
Lynne x
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Our local hospice is clear on its website that 'most people want to die at home'. I haven't been involved with them, but I have always assumed that when the time comes I would be in a hospice, so I am with you in feeling alarmed by this trend. I can't help feeling it is driven by finance rather than patient wishes. Our hospice runs 'Hospice at Home', which apparently turns your home into a hospice - not what I want! I have no emotional connection with the place where I live, and am fairly sure that my husband would get a better experience if he was sure I was being cared for in a hospice.
I used to work for Sue Ryder with the ‘Hospice at Home’ team. It’s such a personal decision. It depends on your family, home, your own peace of mind. I think it probably is financial. Sue Ryder receive some money from the Government but basically, they are a charity. I think Sue Ryder herself chose the properties, which are in acres of grounds & the old buildings don’t look like hospitals. The upkeep is huge. Now Hospices seem to be used more for “symptom control” & many people do choose to die at home.
Gosh - what a subject! But worth thinking about & writing down. Personally (although I’d prefer not to think about it!), I’d rather be at home, in my own bed (or not in bed - on the settee!), able to have my husband around & as many visitors as possible, cups of tea anytime, plus my cat, garden etc etc.
If Nettlebed closes, there will be other hospices in the area, but perhaps further to travel. I would be interested to hear your thoughts. May it be a long while before you have to think about these things. Linda xx ❣️
I have been very fortunate so far in having to come anywhere near having to having to seriously contemplate end of life care but my instinct always has been (and was when I thought I might be in that position, many years ago) that I would want to be in a hospice, at the end for so many reasons.
I'm sad for you about your hospice. And of course it's got to be all down to money. Pretty sure Sue Ryder would be horrified.
I don't want to die at home because this house has no special memories for me and I think my family would find it very hard to cope with that situation. When in a hospice your family can have quality time together with you, not worrying about giving medications and nourishment. Nettlebed have a beautiful family room where your family can stay with you and sleep there. If you look on Sue Ryder Nettlebed web site, you will see what they were offering - what they are offering now is very different. They have said that the reasons are not financial.
I was diagnosed with stage 1V PPC in January 2014 and have had all the surgery, chemo and treatments available. I am about to try one last time on Monday and am going to Oxford to possibly partake in a new trial. I, like everyone else on this site, don't know how long I have, but I am fast running out of options. If Sue Ryder stays open for another 18 months, then maybe my wish will be granted.
There are so many happy memories in my house of my children growing up, parties, and just general family life and I do t want these to be overridden by memories of me dying here.
I’m (hopefully) not at that point yet so I haven’t really investigated the hospices near me but I sincerely hope that will be an option available to me.
I nursed my mum at home because thats what she wanted and where she wanted to be. 'Home' to mum wasnt the house she lived in but being with her family. I can't say Ive given thought for myself, a decision to be made when the time comes xx
I would say that most of us are worried by the word hospice and what we think it represents. I was adamant my time would finish at home. However, now in my second week at my hospice for symptom control I know this will be my choice in a couple of months time when I come to the end of my journey
I believe many see the hospice as an extension of oncology when in fact there is no similarity at all. I want my family to go to my home as a safe haven after I’ve gone. I wouldn’t have been so objective without the experience
So really the survey should include personal inpatient experience of hospice care as a question
The word is scary the reality is completely different. It seems a little like financial injection has taken precedence to me
Thanks for the reply LA, I somehow had a feeling that you would agree with me. We have a meeting with Sue Ryder hierarchy on Tuesday and need suitably probing questions to put to them.
I spoke to some staff here tonight after reading your post, they said that many change their mind after being in here, and decide that this is the sanctuary of safety they need, and then the family can go home and grieve too.
The service itself sees more than 50% return home to carry on living after help to manage symptoms and/or pain. That too many associate it with cancer only and it is a multitude of illness, not all life limiting but life restricting. An education in living with a new normal. I think there's a risk that this could follow the demon path of the NHS, think money not think humanity.
My husband died in a hospice and his last few days were as good as they could possibly be. It was a beautiful place, full of truly caring people, and it was easy for his friends and family to spend time with him. I couldn't possibly have coped at home. Since being diagnosed with OC, I know I would prefer to die in a hospice and I'm saddened that it's felt to be necessary to build still more luxury flats, instead of providing a supportive facility for people at the end of life. Deb
Such a personal decision, but just to put a word in for Hospice at Home provision: the husband of a friend had this service for several years, dying at home, and they were very happy with it.
Another friend who worked in a hospice echoes what you all say about people's expectations, changing your mind and us not always wanting the same thing as each other.
The modern UK (not alone in this of course) does little to foster supportive anything for anyone.
Pushing providers into making really tough decisions as they have no realistic alternative. They're all doing it, charities, councils and the private sector, though with different motivations of course.
My local council is proposing to close its one remaining fairly new build residential nursing home (saving money). My mother's residential home (private) has planning approval for major developments (making money) which I hope she doesn't survive to see.
Have we ever given politicians a mandate for any of this? I haven't!!!
A hospice definitely. I live on my own and when I am I'll, lying in my bed for hours on end I feel abandoned. My children call in after work to see if I need anything, but those long solitary hours are soul destroying!
Oh Jenny I feel so sorry for you. I live on my own and do worry about later when I cannot get out and am no longer independent. I have children but they are all very busy. I think I will check out hospices now ready for later.
My biggest fear is sickness and pain. I live many miles from hospital. I have visited the most local hospice and the atmosphere is one of peace and tranquillity. I think it is appalling that they want to close your hospice a nd hope that people will campaign to keep it. Could you start a petition of facebook campaign? I'm sure you are not alone in thinking this way.
I already have started a government petition, written an article in the local paper and have paper petitions out there. I have tried my best to keep awareness of the situation in the local community.
I am so sorry you will lose your local Hospice, Lynne. I have already decided that I'd rather be at my local Hospice at the end rather than put my hubby through what I went through when my mum was 'end of life' at home with me!
I do hope I have years left but it's best to have a plan for when things aren't so rosey.
Oh gosh - no! The hospice at home idea? I don't like it one bit! I can honestly say that we made the wrong decision having Mum at home for her final days - care was difficult to co-ordinate and left Dad shattered and an emotional wreck. So much so, that after Mum passed he wanted to sell the home immediately as he couldn't bare to be in it any more after the trauma. (I hope me being honest doesn't upset anyone)! My dear Mum would have been so much more comfortable in the hospice in respect of constantly monitored pain relief etc., and it would have spared us some very painful memories.
Hospice ....I have seen friends nursed to the end at home , a mish mash of what's available via Marie Curie , McMillan ( not great ) , local nursing etc ....awful for the family and not great memories . For those of us in London there is St Josephs in Hackney , where a training scheme is in place to provide Intensive care at home . Live in care exists via a plethora of private agencies , but but costs a fortune , putting yet more strain on families . QCC repts need to be read scrupulously ....who amongst us is up to that ?
It is impossible to believe that as well as coping with this disease , we have no end plan according to our choice .
We all know we have to die ....not one of us wants to be in pain nor discomfort and therefore our struggle must include Hospice care for those of us who make that choice , or , just as good care at home .
Until this Government is removed and one with a social conscience empowers local authorities to put in cradle to grave care of the best quality , I fear we are doomed ....
Dear Lynne - I know the Nettlebed hospice very well, my father died there (from Sonning Commin). The care was excellent and the house and grounds beautiful. What a shame if it changes, I will follow with great interest. Nicola
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Kindness of Strangers
valerie harrison
Brilliant service from my hospice
a sleepless night again !
Pretty happy today
