feeling no cares: feeling abandoned... - Lung Conditions C...

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feeling no cares

primrose71 profile image
54 Replies

feeling abandoned 81yrs old had COPD for 13yrs had a lot of infections this year Doc stopped emergency steroids as had too many fined for an appointment 2 weeks ago but none doc phoned gave me steroids moxicillon said to get appointment with COPD nurse for assessment which haven’t had since Clovis started she phoned me to cancel day of appointment said there was no point as not anything more she could do for me but said she would phone respitory nurse at hospital she phoned me to say she could put me forward for Marie currie forum to talk to them and other people like myself I said so I am getting worse then she said not necessarily but feel no one helping me with breathing as it’s not good this week again not looking forward to Exmas with the holidays in case worse as our hospital like all the rest is overflowing what times these are take care everyone sorry for the rant .Ann

54 Replies
craftyone profile image
craftyone

Hi Ann I know that feeling very well. I started fifteen years ago with Interstitial lung disease at the age of 49 . I have had 2 strokes, liver problems, diabetes and disc disease of the spine. I sit 24 / 7 on oxygen in a rise and recliner chair and if I leave the house it's a wheelchair. I have never had a diabetic foot check and have had to buy my own equipment apart from the wheelchair.My recliner chair is old and uncomfortable and I cannot afford a new one but still no one will help me.

Like you I feel totally abandoned by the NHS. At 64 I should be living my life, whereas I just exist.

I hope things change for you. I wish you a peaceful Christmas and a healthier New year.

slram profile image
slram in reply to craftyone

Is that typical of health care in the UK???

craftyone profile image
craftyone in reply to slram

The big issue is that some people get everything they require but there are more like myself who even though worked until becoming so ill and paying taxes and national insurance get disability allowance and ESA and that is it. It all boils down to the same issue of the postcode lottery, different county's have differing policies.

slram profile image
slram in reply to craftyone

But is that a good thing?

davidcantswim profile image
davidcantswim in reply to slram

No. Although things are changing and annoying at times if you are really sick appointments are easy to get.

Big changes are afoot and being 71 I have seen it all !

slram profile image
slram in reply to davidcantswim

As long as they do right by you!

slram profile image
slram in reply to davidcantswim

PS I can't swim either.😀

peege profile image
peege in reply to slram

This is in reply to scram....

we have a free health system in the UK slram so its fairly normal and seems to be a postcode lottery on the quality of support unfortunately . The NHS (our National Health Service). My neighbour gets good support from her GP practice but I don't from my different one, it's impossible to get through on the phone. Critical care once you're admitted to hospital is usually excellent. NHS nurses & ambulance crews are striking at the moment so very tricky situation - they need and deserve better pay & working conditions.

UK residents pay for the NHS via our taxes but sadly our tiny land is bursting at the seams . Some better off people pay health insurance so have access to private health care. For ie, if you need a hip replacement if you can find the cash to go private it can be done fairly soon whilst those relying on the NHS may have to wait years depending on the waiting lists in their area. England, Wales, Scotland & Northern Ireland have slightly different systems, in Wales & Scotland medications are free to all whereas in England it's free to older people, children & people on government financial benefits (I don't know about N Ireland). Other parts of Europe have different systems.

slram profile image
slram in reply to peege

Thank you, have heard some things that aren't so great about the system and appreciate learning from you.

Patk1 profile image
Patk1 in reply to craftyone

Perhaps send for piece of foam to make yr chair comfier x

Alberta56 profile image
Alberta56 in reply to craftyone

That sounds dreadful. I hope your friends on this forum help to cheer you a bit, but it sounds like you need real concrete help on the ground. xxx

primrose71 profile image
primrose71 in reply to craftyone

thank you craftyonne. That’s awful for you nhs is needing a shake up to help us take care and hope you can have as nice a Christmas as you can hugs.

slram profile image
slram

That is awful! They write you off because of your age; my doctor does the same to me and I am 68. I am looking for a new PCP. Please find someone who will give a damn! That is terrible, I feel for you. Take care of yourself and find another doctor please! You matter very much.

tomhatha profile image
tomhatha

I know jusy how you feel. I had Covid at the start and a doctor came to me and said"If you have a strok or heart attach I will not reveve you. When I said I will not sign a DNR HE PULLED MT OXIGOXYGEN PIPE OUT OF ME AND LEFT. HE NEVER SAID WHO HE WAS OR ,HOW DO YOU FEEL.I think they are trying to get rid of the old generation ( who paid all the money in from our wages since the NHS began.

Izb1 profile image
Izb1 in reply to tomhatha

You should have got his name and reported him. It makes my blood boil when people are treated this way x

tomhatha profile image
tomhatha in reply to Izb1

I couldn't because he was in and outand he was a young doctor keep happy and try not to worry, Tom

primrose71 profile image
primrose71 in reply to tomhatha

that is shocking yes agree think they want shot of us thank you for replying have as nice a Christmas as you can take care

tomhatha profile image
tomhatha in reply to primrose71

I hope you and yours have a happy Christmas TomIf you look on audiomack I have some xmas songs and rock as well as guiyar music on there you can download it for free, I don't believe in charging ha ha

primrose71 profile image
primrose71 in reply to tomhatha

thank you tomhatha that is absolutely shocking with that doctor he should have been reported pity you didn’t get his name there is no compassion now yes think they want rid of us olives you take care and have as nice a Christmas as you can.

tomhatha profile image
tomhatha in reply to primrose71

I've got over it I got myself out the next day because I was being given my daily tablets 4 times in the one night I was there ,but it took 5 weeks to get to where I knew what was happening and over it(Covid) by the way they sent a mail to my doctor saying I had not got Covid,so when Igot a scan it showed ground glass ,(the way they test for covid) and in that night I was woken up 4 times in the night and given the bright yelloe stick up my nose 2 nurses each time and each did the check so 6 teats in the one night and a negative result each time. the sticks were 5 inches long and the diameter of a mans little finger round .Happy christmas to all on this sight and keep happy no mater what TOM

Patk1 profile image
Patk1

So sorry 4u,feeling neglected.id ask gp to refer u for palliative care.there are many provisions of care and support within that.yr nurse was wrong to not do as gp asked.i don't think these dark winter nights help either.do u have any family? Sending u a long hug🤗😘x

primrose71 profile image
primrose71 in reply to Patk1

thank you PatkI yes family good at getting shopping etc prescriptions not easy here they have to wait in queue to put it in then another queue when picking it up used to get delivered but takes 2 weeks chemists so busy now have a nice Christmas take care x

Patk1 profile image
Patk1 in reply to primrose71

Xxx

katieoxo60 profile image
katieoxo60

Hi Primrose , the Myton breathing course is all thats available now and admissions are only made if your breathing is very poor or you can't speak because of it. I felt like you deserted but it is how it is all we seem to have in the older age group is to take care of ourselves and hope for the best. It seems that social care is the same, those who do get social care often don't get enough to meet basic needs like cleaniness . Cleaners are very hard to find even if you can pay. Private care is much the same I am told. So stay with us at least you can air your thoughts on here. Have a lovely day its warmer, snuggle up and relax , best wishes for Christmas. xx

primrose71 profile image
primrose71 in reply to katieoxo60

thank you Katie yes social care not good now and as you say just need to carry on as best wee can but not right after working all our lives you take care too and hope you have a nice Christmas.

Mavary profile image
Mavary

I must admit I got the same impression from my DR. He said to me well you are getting older and things are winding down. I thought Thank You very much for that.

primrose71 profile image
primrose71 in reply to Mavary

thank you Mavery it’s not good at all making us feel neglected you take care and have as good a Christmas as you can .

Mavary profile image
Mavary in reply to primrose71

They’ve been very good with me so far but what he said and now others have said things it has got me a bit worried.

Izb1 profile image
Izb1

How terrible for you Primrose71, its not nice to be ignored when you are getting older. Perhaps you could contact age concern and ask their advice. We also have a help line here on this site 0300 222 5800 who I am sure could point you in the right direction. Patk has also given good advice for getting palliative care. Do you have family at all that could help you out ? I do hope so. Please keep us updated on how you get on x

Thepainterswife profile image
Thepainterswife

Oh Ann I’m so sorry you’re feeling this way , it’s difficult enough dealing with illness without feeling you’ve been deserted by the professionals but I hope I can offer a bit of info that might cheer you up A few months ago my 75 year old husband was signed off by the respiratory team , he too was told there was nothing further they can do and referred to McMillan nurses. A nice young man came had a long talk gave us a phone number and hasn’t been seen since but he did pass Geoff to the district nurses because he wasn’t happy about a blister on Geoffs leg . Cutting a long story short at that point we were totally confused about who was actually caring for Geoff and who to call for help. It took a while but we now have a routine were the Gp sends out antibiotics and steroids ( which don’t seem to do much these days) and the nurses come in as often as they feel necessary once per week at the moment , it was once per month then fortnightly and has been twice per week To be honest his breathing is very poor and it seems it’s not going to get any better but we do feel very supported now. There just seems to be that sense of abandonment when there is a transition in care givers and I hope this is the case with you too Try to keep your chin up we are all here for you when you need us 🥰🥰 xx

primrose71 profile image
primrose71 in reply to Thepainterswife

Thankyou that sounds good he is getting help from them so sorry he is not so good but lucky to have you to help too I on my own kid do there best but working so not easy for them you have made me feel a bit better but it will likely take a while with the holidays coming and how things are take care.

Thepainterswife profile image
Thepainterswife in reply to primrose71

I’m sure your not alone in wishing the holiday season was over and done with , it must be very difficult being alone but do try to enjoy yourself in any way you can - enjoy the many feel good films on tv , indulge in your favourite treats and remember there will always be someone on here to talk to even on Christmas Day. I will be checking in throughout the day and I’m happy for anyone to pm me if they need a chat 😊x

primrose71 profile image
primrose71 in reply to Thepainterswife

Thankyou very much many nice people on here take care x

Littlepom profile image
Littlepom

dear dear Primrose,

I don’t know where to start.

I am incensed, more than incensed, incandescant with rage!

So angry that I can hardly breathe, let alone speak!

Not only at the lousy treatment that you have been having for your copd but also that some of those who reply to you have exactly the same lack of care and yet accept it. Appearing to believe that this is what we should expect ‘at our age’.

How DARE this nurse write you off because she has reached the extent of her very limited expertise in your condition! Likewise, the hospital nurses who also have written you off with no investigation and suggest that you talk to others in that position. Well you are already doing that!

When did you last see a proper respiratory consultant? With numerous infections occurring it is possible that you could have developed another condition ( bronchiectasis?) alongside your copd and need the proper treatment that goes with it. In any case, the treatment that the GP is giving you is not working and is inadequate for your needs. A good consultant has knowledge which your GP and the useless nurse do not have, numerous investigations and drugs at their fingertips which could improve your quality of life no end. You need to be under the care of a good one.

We need to demand this. Get someone to go to your GP with you. Insist on an appointment ( mentioning starting the complaints procedure helps with this) Tell your GP that you want proper investigations to find out what is going on with you and do not leave until you get a referral to a consultant.

Don’t take no for an answer and don’t be intimidated.

This goes for everybody else whose needs are being neglected because of a failure in the duty of care by their GP, social services and others whose wages are paid by our taxes. Get on their backs!

I am now going to have a cup of tea and give my blood pressure a rest.

primrose71 profile image
primrose71 in reply to Littlepom

thankyou Littlepom. You sure have determination wish I had some just now think I have only seen a consultant once a long time ago will try and get an appointment at Docs after the holidays and will get my daughter to go with me no point in trying just now as saying they are short of staff and doctors due to illness take .

Littlepom profile image
Littlepom in reply to primrose71

The usual excuses. Good luck. You deserve better

Karenanne61 profile image
Karenanne61 in reply to Littlepom

I concur with everything you've just said! It's appalling the utter lack of care this forum highlights. 🤬🤬🤬

Mavary profile image
Mavary in reply to Littlepom

well said! I’m definitely not ready to give up yet. I’ll definitely fight if I need too. Xx

Lol1944 profile image
Lol1944 in reply to Littlepom

"And yet accept it" Those four words very very unfortunately really get my rage going. I do agree with everything you say but so often come across people who accept as gospel what their gp says. I have friends who seem to dare not to fight for their entitlement and their health deteriorates before my eyes. It amazes me and concerns me greatly.

Littlepom profile image
Littlepom in reply to Lol1944

Yes I agree with you. Unfortunately so many of us are worn down by the debiliting effects of our condition and cowed by those in authority who abuse their power and fail to provide the care that they should. All we can do is encourage others to bravely demand better.

Izb1 profile image
Izb1 in reply to Littlepom

Sorry LP but i burst out laughing when i read your reply (thinking , thats my girl) and had a vision of you with feathers coming out of your head and your face beetroot doing a song and dance. I am trying to find a cartoon that would display this so when we feel like this we can bring it up. As always you have given good advice x

Littlepom profile image
Littlepom in reply to Izb1

That's funny. ' she wore red feathers and a hooly hooly skirt' 🤣🤣

Izb1 profile image
Izb1 in reply to Littlepom

Ha! Yes thats the one x

MoyB profile image
MoyB in reply to Littlepom

Well said! Xx Moy

CDPO16 profile image
CDPO16

Just sending you a hug and wishing you well. Not much help I know xx

davidcantswim profile image
davidcantswim

Be well Primrose. I see the NHS changing daily and can see it getting better.

I have a few problems but carry on.

I can see pharmacies hiring junior Doctors each day.....

GD53 profile image
GD53

Hello Ann. Don't know where you live but my local welfare carers group helped me with everything I needed to help me manage my condition. From increased money to occupational health who come into your home and assess your needs and help.in anyway they canI live in Durham but where you live will obviously have a welfare group. Worth giving them a try.

Wish I could help you physically as caring people helped me.

Look after yourself pet. Hope breathing improves. Best wishes. Dee. xx

primrose71 profile image
primrose71 in reply to GD53

thank you GD53 good you are getting good help I am in Scotland they don’t have the carers here to help elder or I’ll people hospital asking relatives to take them out of hospital and care for them temporarily to free up beds if cares got better pay wee wouldn’t be losing them it’s not good many places in the NH S time something was done take care.

Chrisvern profile image
Chrisvern

I have every sympathy with you, primrose 71. I have just been told by my respiratory consultant that I have reached the end of the treatment road and will suffer with a lung/chest infection for the rest of my life. The only treatment left to me is nebulized gentomycin which will not cure the existing infection but may stop other infections occuring.

The consultant says he will tell COPD and pulmonary rehab teams about me but that's it otherwise. He has made no mention of any psychological support to help me and it sounds like that's what you need too.

So, I'm going to start a new chat on here to investigate the possibilities of psychological support for people suffering with asthma and lung conditions, Particularly for those nearing the end of their lives. It seems to be standard in a lot of EU countries but not here in UK

primrose71 profile image
primrose71 in reply to Chrisvern

thanks for answering Chrisvern you not getting the help either never heard of gentomycin I hope it keeps infection at bay for you take care and good you wanting to help on the site nice people here.

peege profile image
peege

I'm so very sorry that you feel abandoned and written off, its just awful and sad. Do you have a charity like AgeUK in Scotland or financial aid from the government ? Could your family help you find a newer recliner - there are often nearly new ones on ebay or gumtree.com . Many people give them away when they are no longer needed. It's just so wrong. Unwell people can purchase a recliner with the 20% VAT taken off (at least that's so in England).

thinking of you ×××××

MoyB profile image
MoyB

Sending you virtual hugs (((((❤️))))) and hoping you soon get the help and support you need. Xx Moy

Guitarman230 profile image
Guitarman230

Ann, dont let them get you down , My advice to you is live to well over 100 years old ,they will want to Come and talk to you then alright, they forget old age will Come to them aß well .you are an Inspiration to us all. Enjoy your Christmas Ann. And look forward to the Future . God Bless you.

primrose71 profile image
primrose71 in reply to Guitarman230

Thankyou Guitarman230 you have a nice Christmas too and keep well take care.

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