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Tired of being let down

lucylifelucylife Member Posts: 10 Listener
edited March 2020 in Disabled people
Hi, 
I've been thinking about joning and saying hi for a while now, but typically, I finally do it on a bit of a downer I'm afraid! 
I 've just spent 9 days in hospital, which would be fine if it was all medically needed. 

Unfortunately.that wasn't the case. When I started to recover and it became clear I was medically fit for discharge, I was transferred to a side room. 

I was informed that my daughter who is in her 20's who lives with me was no longer prepared to do my care so I had to stay in hospital until a care package could be arranged! I felt like the whole world had fallen away from me. My daughter and I are so close. She has been caring for me since she was young with very little support from anyone else. We have been promised chc funding.for months but nothing has happened as.usual, so my daughter has done it as always. 

As I was rushed in due to a life threatening asthma attack  ,I didn't have a phone or anyway of speaking to her, and she had been ill so hadn't been able to visit so we hadn't communicated since I was admitted, only what the nurse had told us about each  other. I

I didn't know if someone has said something to her, or if she had become ill . It didn't sound like her to say that though. Being in there can make me more unwell and the care is pretty awful where we live to. She actually thought I was too ill too leave still! 

When I finally spoke to a social worker and said I wanted to go home, she said she would have to check with my daughter!  My daughter agreed , but I was still asked if I would consider going into a care home while they sourced care and I said no as that could take months and I would get more ill.and my daughter needs.me.at home as.She is.also.ill. She said your daughter said the same tjing, she would rather continue caring for you, at home whilst waiting for care than you go int I a home! I said I know! So why are we having this conversation then! They still didn't discharge me! 
Then all over the weekend I kept asking to go home and they refused,said they couldn't get in touch with my daughter, if I wanted to self discharch, I would have to get myself down to.reception,.and get a taxi! 
I am fully hoisted, and ambulance isn't allowed to bring my wheelchair to the hospital and I need a chair that tilts and has a harness on it for safety! Therefore need a stretcher ambulance to get home and they said if y I I self discharge it your responsibility though,. We can't get u an ambulance because I have chosen to go home to an unsafe place and we can't guarantee anyone will be there! 
Firstly !I daughter is there as doesn't go out,hospital  already decided, I am competent to make my own decisions so no safe guarding issue.otherwise you would and should have got panel like threatened to.do last year.but didn't as you knew you were wrong then too! 
Basically they eventually discharged me on tuesday! Then they still tried to tell my social worker I discharged myself, oh and they rang my daughter up 5 minutes.before.I arrived home to tell her I was in the way! Yet at the weekend that was one of the reasons I couldn't go, because they supposedly couldn't find her number! 

So sorry about long message.but it is about the fact they deliberately took away my liberty to allow.me to come.home, without having any legal.power on their side to do so. They lied to me.about what my daughter said, they lied to her as well, we only find out the truth, when we spoke to each other directly at home later on. 
We.are.just so tired of being let down by everyone.

The biggest joke is,.They came to see about sorting out some of the care to help us, as they said it was so important, asked my daughter to make any changes, needed to the care plan and the lady would pick it up a few days later and get it sent off so they could get the care sorted out. 

As.usual didn't hear anything, Over a week later,.gets.an phone call.asking how.She has been, saying not to worry, doesn't matter that my daughter has put loads.of effort into making notes on the care plan or anything! The lady had already changed it loads herself, making it sound like, my daughter will keep helping even though we've said she needs a break as she is ill as she also has same condition as me and many more beside. so now she has to change it all again, the lady then went on say she had just enjoyed a nice few.days break! 

So these people.not think how they come acreoss! I get the are entitled to leave, but when they tell you they are going to sort your care care out as a matter of urgency n cause you have been let down so many times, your family,.is exhausted, the hospital.has just broken the law, and caused you both more distress, and when you think someone finely gets it and they are trying to get things sorted for you and that is why they haven't been in touch, you discover,.They have.just been on a break again, once again leave.your daughter caring 24 hours a day 7 days a week. When they promised they would at least sort out night care.as a.matter.of priority! 

SOrry, getting it all off my chest but between, nhs and social services letting us down over the years it is frustratin g.

I don't even go into hospital now until I become critically unwell because we don't trust them, I feel safer at home but again that is more pressure on my daughter, I am just lucky she is so amazing.

I am and I with the hospital though, I don't understand what their motive is. It isn't like they even treat disabled patients, with respect or dignity. They never actually spoke to me properly about their decision either. 

Thank you for listening. 

I just need to figure out the next step in the complaints procedure now.

Hugs allxxx



Replies

  • pink_princesspink_princess Member Posts: 131 Pioneering
    Hi @lucylife

    I’m one of the community champions here at scope who welcome and advise new people to the community.

    firstly, well done for joining the community 😀 now that you have hopefully we can get you some advice and some support as you seem to be going through a lot. we are all supportive here.

    i’m sure they’ll be lots of people who will be able to advise you a bit further.

    welcome to the community 😀
  • lucylifelucylife Member Posts: 10 Listener
    Thankyou! I'm usually quite a happy go lucky person on the whole,.let's face it, it kind of helps dealing with the joys of disability, or rather other people's.attitudes towards it on a regular basis lol
    When it comes to so called professionals and the potential for them to take away rights , it becomes a scary situation though if you are not always able to communicate, and people often assume , that if you can't speak or your speech is very slurred   then you lack ability to make decisions. Due to have a Neuro condition, I can overheat in hospital, which can.make me really unwell, so being in hospital is the worst place for me when I am like that! I

    On top of that, I seem to be at the only hospital in the country, who still refuses too accept a genetic diagnosis as confirmation of the primary condition, despite being symptomatic since childhood, and a few members of my family having it and it now being progressive, in my case.
    They just don't understand rare conditions, alongside disabilities, in fact, I don't think they understand much at all hehehehe.

    Hopefully we can move out the area, at some stage! 


    Thank you for welcoming me, it's nice to know there is somewhere , where people can chat and not worry about what they are saying.

    I don't always want to share with my daughter, not just because of the normal reasons,.but also because she has the same things going on but at an earlier stage so don't want to put more concerns onto her too about how I  feel, she she is dealing with her own health and feelings around things, on top of looking after me, and seeing my progression and not knowing what that really means for her own health due to the rareness of the condition. 

    Like I said, humour and sarcasm are good, and we are both experts in it! Even when we can't communicate, verbally lol

    Love and hugs 

    Take care 
    Lucyxx



  • janer1967janer1967 Member Posts: 9,122 Disability Gamechanger
    @lucylife Hello and a warm welcome to the community, thank you for sharing your story with us, you really have had a lot to deal with.

    In regards to taking this further have you contacted the PALS a the hospital as I understand this is the first point of contact for any complaints, also have you spoken to your GP to vent your frustration and concerns about your overall care provision.

    Another avenue could be citizens advice or welfare rights.

    Feel free to have a rant with us that is what we are here for and to help and offer support where we can      
  • chiariedschiarieds Member Posts: 7,928 Disability Gamechanger
    Hi @lucylife - Welcome to the community, & thank you for joining. I'm very sorry to read about the awful ordeal you have been through. I bet you were relieved to get back home with your daughter. Then to have the saga almost continuing when your care needs have not been helped urgently. It beggars belief.
    My first thought was to let your GP know the abysmal situation you both have been left with, but I'll ask a member of the Scope team for their advice. @Adrian_Scope might you help here, please.
    I do understand that it's hopefully helpful to chat here as I have a genetic disorder too, which I've passed on to my children (& 3 grandchildren). So, yes, please do talk here absolutely any time. :)
  • AilsAils Member Posts: 2,268 Disability Gamechanger
    Hi @lucylife and welcome to the Community.  It is nice to meet you and thank you for sharing with us.  I am very sorry to hear of everything that has happened to you and your daughter.  That is awful and shouldn't have happened.  I hope you and your daughter are ok now that you are back at home.  You sound like marvellous support for each other!  I would follow the advice given above by members and hopefully @Adrian_Scope will be able to hep you further.

    Meantime, have you thought of contacting your local Carers Centre for some support for your daughter as your carer?  I am sure you will be able to find the contact details of your nearest centre online.  I am also including the Carers UK website for some information for you also as they maybe able to support you both, if you would like to take a look -  https://www.carersuk.org/home

    Please keep in touch and let us know how you are both getting on and please look after yourself.  We are here to support you anytime on the Community so please feel free to chat to us anytime as there will always be someone on here to listen.  It does help so much to talk about these things.  If there is any way we can help/support you then please just ask.  All the best.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
  • lucylifelucylife Member Posts: 10 Listener
    Thank you. Everyone has been so kind. Although we have occasionally gone on our Facebook helpgroup pages to offer advice about our own  conditions, especially for people who are newly diagnosed, we very rarely talk too deeply about how difficult things can get much further down the line. We are so used to just being private and dealing with it all ourselves, it.is a relief to know that there is somewhere to just come and chat so Thank you all, it means a lot. 
    thanks for the websites advice too! 
    Hugs 
    Lucy 
  • AilsAils Member Posts: 2,268 Disability Gamechanger
    You are very welcome, @lucylife.  That is what we are here for and glad we can help.  That is great that you are offering support to others on your Facebook help group pages.  I'm sure you offer people a lot of comfort and reassurance.  I can appreciate you wanting to keep things private as a lot of people are like that, but it is good to know that others can be there to support and help also.  I'm glad you have found the websites useful too and I look forward to seeing you on here.  Wishing you and your daughter all the very best.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,924

    Scope community team

    Hi @lucylife and welcome to the community. How are things going and have you had any updates? It sounds like you're both in the middle of a really frustrating situation as regards the support you both receive.

    I would definitely recommend the advice given above, but I would also say that if you would like us to seek local support for you on your behalf, we would be willing to do so. If this is something you'd like to discuss with us, please get in touch with us on [email protected]
    Senior Community Partner
    Scope

    Your feedback is really important to the development of the online community, so please remember to complete our online community annual survey
  • BrightsidebecsBrightsidebecs Member, Scope Volunteer Posts: 88 Pioneering
    Hi and a very warm welcome to this very supportive community. I am one of the community champions here, so I would love to agree with the other comments and say congratulations for joining as it takes courage sometimes to do so. We are all very supportive on here and can be the helping hand to you as you have clearly been through a lot. Together as a community we can support and guide each other though anything! If you need anything please let me know and I will help you the best I can or point you in the right direction. Please keep us updated if you feel well enough or even feel that you want to share! Take care 

    @Brightsidebecs
    Rebecca 
  • pollyanna1052pollyanna1052 Member Posts: 1,998 Disability Gamechanger
    Hi Lucy...well what a lot you are having to cope with!

    I am also highly dependent on others for care. I am a full time wheelchair user and have to be hoisted for transfers.

    I have had Direct Payments for care for several years.

    My hubby is my main carer, but others come in twice a day to get me up and showered etc and then again to put me to bed.

    I recently went through a new care plan and the assessment with social worker was draining..it took 3 months. They did bring in CHC to help with funding.

    It sounds as if looking after you is now becoming too much for your daughter. If her condition progresses like your`s, she is also going to need carers herself.

    It`s obvious your social services know you 2 need help ASAP...so what is the hold up?

    If they think you can manage without it costing them in Direct Payments, they will do so!

    I have an idea for you...there is a body called Community Matron...it seems very few people know about her existence! She is there to almost work miracles with care issues.  Our`s helped us enormously some time ago.

    I know they still exist, as I looked it up only yesterday. Have a google and see what happens, yeh?

    Good luck chuck. xx
  • lucylifelucylife Member Posts: 10 Listener
    Hi, thanks for you message, it is really appreciated. I know when the system works, it can work really well. Unfortunately, in our area, for some reason things have just gone.drastically wrong.
    We are very aware of the role of the matron, sadly, the title, should not have been given to the one who operates in our area. 
    She is self entitled, think she knows everrhing, because she has some academic background and loves to tell you about it, but very little clinical knowledge, and she is a physiotherapist by trade. She actually had the cheek to tell me we should ring her before ringing an ambulance in future as I had, had a lot of hospital admissions since moving to plymouth! We had pointed out we had only rang the ambulance once ourselves , when my 02 levels were at 62% all the other times were by the gp making the decision to send me in. Also , pointed out when I need to go in it is usually out of hours of it is due to asthma and I don't normally have time  to wait for a second opinion as I try to delay going on until I am critically unwell anyway due to.my distrust if hospitals!
    We had a bit of a disagreement, because I said I wouldn't consider going into a care home when she suggested to my daughter that if I need night care and more medical care that it couldnt be provided.at home and my daughter didn't have the knowledge to provide.the care needed desire having the conditions herself and looking after me for years lol
    When she said ,she was going to be my case manager for chc, I requested someone different because she had made it clear, she wouldn't agree to overnight care for me, to give Chloe a break, as she said they don't do! And she said that professionals are always right, basically because of the years of experience they have and I should always do what they say. I explained, very patiently ,I thought, that most of the world has moved on from that idea to believe that,  disabled people can have a say in their care and life  now as they are people and experts in their conditions and lives and a lot of professionals now recognise this and work together to get the best outcome so people can hopefully live happy and fairly independent lives to some degree or another even if that means with support. 
    She didn't like that! 
    I was told I couldn't have anyone else, and if I didn't want her then my funding would stop and I would be left with no care at all and no.access to xxx funding!   And that is what happened! 
    She wrote to my gp saying I wasn't complying with care so they had withdraw from supporting me just because I asked for a different manager because I said very politely, we have very different ways we saw my care being managed,.which I think is a fair enough response! 

    Admitedly, it probably, didn't help, the first time we met, me challenging her about her experience, but as I had been saying about trying to stay out of hospital and then her coming out with rubbish about ringing her first when I'm a brittle asthma and time can be of the essence, showed a total lack of common sense let alone medical knowledge. 

    We were fed up of her, and various others  for keep bringing up care/nursing homes as an option, when not only would it not be suitable in on so many ways for my needs anyway, but they kept Forgetting about my daughters needs in all of this, as she doesn't not obviously look disabled all the time , they look blank however many times you tell them! 

    I think , I get frustrated because as you or anyone who lives with disabilities/ long term conditions know, if someone says some thing about your medical health who is clearly unprepared or doesn't know what they are talking about, it is obvious within seconds.

    I don't mind if people don't know or  understand, then ask ,and I or my daughter will explain, just don't make assumptions, then write it as facts, and don't lie, to us or other people.about stuff. 
    This lovely matron of ours went one step furthe r, she told the social worker every thing was passed over successfully to chc so she could close the case file! 
    This is part of the reason I was left without care for 6 months apparently because chc  didn't know I existed for 3 or 4 of them despite us writing emails and so on, there was £20,000 in a fund that hadn't been claimed for my care that they are also now asking if I have plans to use it otherwis e they want to claw it back to their funds. As I didn't know it was there though, I think I should be entitled to it , I just need to think how I can use it . They said I need to show how I plan to use it over next 6 months. It's a health budget so I think as long as it benefits my health in some way it can be used how I want . 

    SOrry, I went on a bit of a rant! 
    My brain is on overdrive today. I am having a really good day in some ways at least communication wise, but my brain won't slow down low, I think it is a Neuro thing so sorry if I have bored you or anyone with my rants! 
    I think it is good for me to talk to people. I haven't told anyone about coming on here so I have the chance to just be more honest with my feelings.
    I can't do that in my other sites in case my family are stuff as they have the same conditions and use those site too lol.and

    So thank you for making me feel so welcome.

    I p romise , I don't always complain!It has been a difficult, couple of years admitted ly, and that was completed by the recent event s in hospital for which I have decided to formally complain about but I think I will also look at legal action, because I think this is about more than just me, I am seeing this happen to !ore and more younger disabled adulte, I am fortunate, that some times I have a voice and a daughter who can talk for me but even with this, I was still so powerless in hospital last time.  I don't want that feeling again. 

    That is the One good thing that has come out of this ,,it has help energise me to want to get involved again in disability rights as much as I am able to do as I have become so saddened by the way we are often treated by , professionals.
    That  has got to change

    Again again. I am sorry!!! 


    Thank you for listening to me drone on. 

    I hope you are doing ok
    Your right the assessment can be draining, at times. Strangely, though our assessment was almost the easy part oiginally, I had been in 50/50 social care chc funding for years and no One really wanted to rock the boat with it I think. 
    As I had moved to plymouth though my money had gone down for a whole host of reasons I won't bore you with now and on top of that the council wanted to charge for care! My health has clearly worsened anyway so we asked for new review which was needed any way. My previous council were stil paying my need a year after I moved here instead of the short time were are supposed to!I
    Anyway, when they came, it was my s/w  and someone from chc , it took ages to do the form.but I was not well that day which probably helped, and I hadn't drank or are for a few days because of my Neuro probs. Chloe explained this is normal and that it has been advised that I go on drips when I'm like this but don't want to be in hospital as can become more unwell.there. The chc last was fab and.ring the.docs and got the.home nursing team to come and give me drips at home . 

    Problem was , got worse the drips woudnt stay in and my blood sugars dropped and I had really bad hypos so had to be admitted in the end and had to be fed through an ng tube till I stabilised.
    If we had asked.the gp, we would have been told.no, and we wouldn't have known how unwell I was getting. As I changed wards several times during that admission , they haven't even put it on the discharge papers as to the reason I was admitted either, so when I tell them if I am not eating to keep an eye on my sugars no one believes me because I'm not diabetic!t

    We are at the stage now where we will ask for them to formally look at my whole case I think as there have been so many issues where theory have got it wrong! 

    It does take.a massive toll on the person looking after us too though doesn't it and I don't think that is always apreciated! 
    She ha s.just started studying agsin, and even inspired me to have a go! 
    Even that has been made more difficult for her though, because of her her own health needs, and then still having to take care of me ,particularly during the night.
    CHloe, has helped me since she was 10 full on, but always little bits before then, alongside  her brother.

    She is 22 now, and she does everything for me, and I can never repay her for everything she has done, but she deserves some life too, before these conditions take more of her  of it. away, it has already stopped her doing some of the things she loves most in the world.

    I felt really bad last year we were due to go to two conxsrts , take that and then in the summer , Robbie Williams who Clo, couldn't wait to see, it was a birthday gift ,but that was when I ended up in hospital with the ng tube so that didn't go according to plan.

    We have said when the carers are in place this time she is only to be disturbed in a emergency. We will.see what happens.

    I hope they are competent and have common sense! Sound s easy doesn't it and that they don't talk to me like I'm a two year old! oh and they know to wash their hand and use gloves! I know I am so demanding! The last agency thought it was acceptable for their staff to wear 5 pairs of gloves at a time, so u could actually see the sweat coming off of them  ,rather than washing hands between tasks! Couldn't get them to understand the infection control issues at all, or their office! 

    We have just been told its finally been wit with brokerage, we have got 9 hours in the day and a diff agents doing 3 nights a week! 


    Funny thing is they said at the bottom of the care plan if my daughters health gets worse there is capacity to increase hours, and we are banging heads against walls, thinking, are you not listening?! She is getting worse, Irony is people keep going on about being in a facility for full  time care but actually trying to get someone when you need them is pot luck.

    Hopefully, this care will make a huge difference, and will give the professionals a objective view of my health so may lead to more support with luck. We will see what happens.


    Thank you again.Lucy
    It would be lovely to chat again and I promise I am not usually so self obsessed about all.my problems.lo! But thanks for being an ear, and reading my essay! 
    Love and hugs
    Lucy

     








  • chiariedschiarieds Member Posts: 7,928 Disability Gamechanger
    Hi again @lucylife - As a physio I'm saddened to read about the experience you've had; the person you met should have had clinical knowledge, but what has happened in your case is dire.
    I'm sorry to say I've met 2 physios, when I worked as such a long time ago, of whom I feel deeply ashamed.
    I am in complete agreement with you that a patient is part of the team working with their Drs & other professionals. The best Consultant I ever came across was one who said I don't know, but I will try & find out. That I respected.
    I've also had Consultants whose eyes glaze over after a short while, & realised they hadn't a clue what I was talking about. As you say, you know fairly quickly.
    In my case I was trying to find out more for my eldest daughter, as we also have a genetic disorder, & she was concerned she might in the future have an affected baby. Well it seemed like we might probably have 2 genetic disorders from the research I did.... the chances were over 3 million to one that this could happen, so there had to be an association.
    Our UK Consultants (geneticsts, neurologists, neurosurgeons & rheumatologists) totally disbelieved this. However I came across this New York neurosurgeon, who was finding some of his patients had these 2 genetic disorders. He helped me raise awareness of this association here in the UK. It only took 9 years!
    There are good & bad in all professions sadly. I've even been lied to by Consultants.
    Sorry, I've probably had a rant too.
    Just wanted to say, that's the 3rd physio I'm ashamed of. I really am sorry.
    I'm glad you've found this a safe place to chat; that is what this community is about.
    My best wishes to you Lucy, & your daughter.

  • lucylifelucylife Member Posts: 10 Listener
    Thankyou so much, everyone has been so lovely on here. I rhink thar is.partly i've.been able to breath and just finally sharw how bad things have gotten recently.
    It was interesting, you sayinf abour rhw american connection. 
    The consultant who finally diagnosed me correctly with one.of my genetic neuro conditions had just come back to the uk after working in the states for a few years and had seen a patient there with the same symptoms so he was able to give me a clinical  dianosis within minutes, unfortunately, they didnt do genetic testing for patient benefit at the time, so couldnt get that done rill seversl years later, in Plymouth, and rhe doctors here, still wouldn't accept the results?! fo figure! Thsts why, my neuro docs, in london tell me not to bother with them! 

    Unfortunately though, for me, the damage had been done several years earlier, but i only found this out by accident a couple of years ago. A neurologist, i saw when i was about 17 to try and fiigure out what was going on, was pretty awful to me. Ot was the first time Insaw a doctor on my own, as my parents had not long split up and i was living on my own.

    Anyway, i went in, after a really long wait, at the end of the day, and i dont think i had even opened my mouth, and he told me, ot was psychological, and panoc attacks,  because if it was anything else, then i would have hurt myself before now! I told hom that i had pur mynknee thtough a glasss door when i was 12 because i couldnr sto myself from unning into it. And he said, if there was someone else there it meant i knew nothing bad would happen! 
    I couldnt believe it! 
    It stopped me going to the doctors about it again as i had lost all faith  and i just put up with it until i had my kids and had a really bad episode, which meant i had no idea it was genetic or that i eould therefor unknowingly pass it onto to my daughter as  it is a 50 % chance of passing it on due to being a autodominant gene. The cycle obviously goes on with her, but she has already said , she wont have children, partly because of not being well enough but also because she doeant want to pass this on to any one els.buf people used to say i should have my kids.taken off me because they thought i was drunk and its not nixe that they used to hace to stick up for me when thwy were little and say i was poorly. When you dont have a proper diagnosis it isnt easy though, as it sounds like you know only too well. 

    A couple of years ago i was admitted to hospital and i saw on the letter my my previous diagnosis, and it said something about somatoform disorder! I think i spelt it right! I had never hesrd of it before., so i asked one of my respiritory docs and he was like, that's a bit of an old fashioned one! any way its something about unknowingly making up health or believing youhave an health problem. Amd it was related to my neuro issues. When i explained what is was related to as it was put on there the time i saw that doctor he just crossed it off as he said it obviously isnt true, but warned me it would be all ove my other notes though and that might be why i felt i had such a hit and miss relationship over the years with medics if that misinformation has been hiding in my notes. It should have been hilighlighted and corrected the second i was given the proper dignosis but for some reason it wasnt  and it seems to have become a chinese whisper instead for some people, which has been affecting my care for years,  just wasnt aware of it!  I knew some people treated me different to others, i just couldn't work out why. 
    I also found on there it said i had a history of depression, dated from Jan 98! The problem is, is doesnt give any background.
    My gp gave me a few days of tranquilers.which i chose not to take because i had a 2 year old and a 4 month baby at home.
    The reason she gave them to me though was because , i was exhausted and hadnt slept and was being pulled in a million directions as my dad had just died in a house fire which was front.page. news and my brother was in the burns unit, so I think, i was entitled to be a litle stressed, plus i was still living with this unknown condition, that kept making me wobbly and fall over at the worst possible times, which just made people think id been having a sneaky drink to help me cope with everything, it is almost funny, when i think back on it,considering mydad was the drinker lol

    Like you,.we are still trying to get answers for some of my daughters health issues but its clear we  are not going to get them staying here. I think i said in a previous post, we cant even get them to do a  simple blood test for her. I've never known anything like it.

    The ot sent me an email the other day saying she hasnt done the things ive asked her to do  because she has prioritised the disabled facilities grant because they are due to start on that soon and she thoufht that was more important! 
    It's like now how  do i put  this t this politely? , thats great, but your priorities are wrong then!  Me breathing .properly, is a bit more important! The thing i asked her to do ive been asking for months is to ring up the people who mend my hospital  profile bed and get it fixed as  we have tried repeatedly, to sort it our selves , but now need an ot to say clinically this is urgent. I have respiratory problems , use ventilator, and have dysphasia so need to  be sat up.as much as.possible and not keep sliding down the bed especially when eating or drinking.even  when sleeping i need to sit up if not well.

    I feel like i have entered a weird twilight zone with people.down here honestly.
    You ment physios! You should have seen the ones we had here the other dsy, they actually mentioned the idea of having  me sit on the side of the  bed. Oh and sugfested having all the testing done again to see.of it was definitely right! They.said knee surgery shoudnt have stopped my leg from,working properly. Clearly hadnt heard of nerve damage, they also said i just needed to do ankle strengthening exercises. I have never had strength in them, even as a child, i had physiotherapy., More recently i was given splints or ufo to wear because after surgery my ankles and feet go in spasm so  i can only wear then for a certain time. 
    They never even established a base line for how i was previously, so im not sure what they they think their game plan is, baring in mind i know, and i have been told however much i want it walking is not an option, apart from the multiple conditions i have i also have the fun of losing consciousness without warning.

    I do think, they are only geared uo to help peorpke who become unwell through , strokes. Heart attacks or similar. They do not know how to help people who are already disabled and are or want to be  actively involved in their  care, 

    I juat cant wait to move out of this area! 

    I am definitely going to fo ahead with formalising my complaints against both heath and social. I want to see if they can open some kind of case reiew and see what has gone wrong pas there has been so many issues in every.aspect of my care that has failed and no one wants to take responsibility and i want to know why.

    Someone has been in touch to ask about a possible house swap in.Luton so that mifhr be positive news if it pays off! I donr know much about it other than it is near where my sister used to live, bur she has recently moved! 

    It looks ok, and it is a lot nearer to london, for my hospital appointments and also nearer to Birmingham, as my son has licer disease so will need a.transplant at some stage but he isnt there yet thankfully! 

    My wonderful but  rather crazy daughter still wants to be a doner for him, but as i  keep explaining, there is no way on earth that can happen! Her blood pressure can go as. Low as 50 over 30 at times, although it makes her feel really unwell for hours when she is like that, no one can explain why she is still just about functioning, when others would be clinically very unwell, but they cant  give an answer, but it is scary too, so they may fit a pacemaker at some stage we were told by her previous consultant but as she doesnt have one at the moment it is a bit more of a worry now she is getting more unwell. It is another reason we want to move. She has a condition called postural orthostatic hypotention alongside various  other things.

    Good job, we have a bit of a sense of humour isnt it , we would all have lost the plot before now, i think otherwise! 

    I must admit , it does tend to go on the sarcasm side more often than not, but thst is because people tend to come out with daft things lol

    My best wishes to you too, i do agree with what you said though, about when doctors say they dont know, and look it up or say they will find stuff out, that get my trust and respect. 

    Like you, i dont expect professionals to know everything, they are huuman at rhe end of the day and we are complex beings , especially where our brains,genetics and autoimmune stuff comes inro play!  

    It is frustrating when we know something is going on and they dont listen, ecen if we have done the leg work ( its funny how awkward  those kind of words  makes people feel
    when your in a chair heheheh😜😜😷🙄)

    It is amusing, how people like to get offend ed on your behald abour something thsn dont realise they are being just as  offensive  by their behavior to you by either asking if they can pray for you?! I 'm a christian, but i also believe in a time and place! middle of a supermarket isnt it! , also telling you thst you are too 'pretty or young to be disabled' 
    The other  annoying thing is people bending down and talking to you like you are 5, or when i can't speak or move , some peole keep touching me and strokin my hand which i find really irritating, and this is carers telling  me how awful it must be , not realising the only awful bit, is them telling me  how the 'hate 'hate seeing me like this! ' it your in the wrong job then! 
    Oh one other thing people either speaking loder and slower to you,.or just generally.assume you are stupid , because of the way you  sound! . 


    Dont know how i got onro that subjust, my brain obviously drifted a bit lol.,fosh it is 3. 15 in the morning no Wonder lol 

    I Will leacd you in peace , i am sire i have bored you enough for one night ,.for one night.

    Love and hugs

    Lucy



  • bekindalwaysbekindalways Posts: 79 Member
    @lucylife  I hope that you are ok.  Just spent 20 minutes typing a response and it disappeared on me.  Doh!

    I can only imagine what you are going through.  Have you considered respite?  From what you said regarding the hospital stay, it would seem to be a round about way of getting you some respite and also so time for your daughter to do the same.

    It must be such a difficult position to be in.  You are poorly as is your daughter. And you've mentioned she doesn't leave the house.  Please if you can get a period of respite for yourself and your daughter.  The hospital would not lie about what your daughter said.... nor should you judge her as she too suffers.  

    I once worked for a society where I was able to help carers and indeed the sufferers get respite and a recharge of batteries so to say..... even had lunch with Princess Alexandra.

    So try to think about some form of respite, I honestly think your daughter needs it too.  I feel guilty every day because my husband gave up work to care for me in January, but I push him out of the house to do things he enjoys.

    I wish I could send a million cuddles to you and your daughter.  Alas you only have a message of support,

    Be strong and tell your daughter to do the same and accept what support is available to you.  Even if it's a care home for a bit,  maybe you will be staying at one of the many I make a scrumptious Christmas cake for  ( despite my disabilities) 

    Good wishes to you and your daughter. Xxxxx



  • tru88letru88le Posts: 95 Member
    You go to all that trouble to get out of hospital  knowing you cant cope and have to be cared for by your sick daugher then your complaining because they dont then bring the hospital to you. 
    Why give up 24 hour personal care and then request care at home?
    I always thought a side room was a bit of a luxury meself.
    Seems a bit tight complaining about  them saying you self discharged when thats what you wanted anyway and they didnt want you to go. why would that bother you? Is it because it takes away your grounds for complaint if it all goes wrong?
    Not grilling you no offence intended.
  • lucylifelucylife Member Posts: 10 Listener
    Hi,It is fine, but you have totally misunderstood What i have been saying.
    What i have been saying is that We have been let doWn by people Who should hace been sorting our care out, the money Was there to do it, but  people didnt do their job properly, over the last 6 months, so my daghter had to do it, Without support. My daughter also has health needs, so i need to be at home because she  needs support from me and there is no one else to  give her the support she needs, if i am not here something else social services keeps forgetting about. 

    As.for saying, getting cared for 24 hours in hospital, one of the main reasons i try not to be admitted is because i dont feel.safe When i am in there. 
    The care is aWful, i usually come out more unwell than i go in, generally With very sore skin because i am not  Washed properly or often, i do not get turned , nor put on a correct pressure relieving mattress. The staff are incredibly rude, they dont know how to put the thickener in the drinks properly so i dont choke, they dont stay With you When you drink so i dont choke, it can take them upto tWo hours to aswer a buzzer so if you are having an asthma attack or trouble breathing or fit or prone  to losing consciousness like i do.and then not being able to maintain my airWay during this time  being in a side room can cost you your life. So no, i am not at all Worried about my grounds for complaint being taken aWay if things go Wrong at home because at home i knoW i am safe. It Was doWn to my daughters quick acrions that i am alive noW. My oxygen levels.Were in the 70's when she first called the ambulance for me and she had to call them again because thwy were taking too long and my sats had dropped to the 60's. Only the week before that i had another very sudden one , that if chloe hadnt been in the room with me at the time i woudnt have survived, because i have brittle asthma, luckily i only have ones that sudden very occasionally and we have a nebulizer at home to manage them, but sometimes.i need a bit more help and i have no choice at the moment but to have an ambulance and go to hospital, i used to have a good team around me, but that isnt the case in this area sadly and i dont feel safe. I didnt even have access to an inhaler in the side room. My condition means i can have periods of time where i have paralysis of my whole body and loss Of speech and can only communicate by blinking so i should be carefully monitored, as it can happen at any time, This clearly didnt happen! 

    Your right,  a side room, can be a luxury at times, it can be peaceful and quiet, but it can also feel like a prison, when you are foeced to be there against your will as i was, and you just have 4 walls to stare at.as i couldnt get out of bed. I had nothing ro occupy my thoughts, With apart from, the lies i had originally been told by the doctor Which was that my daughter had said she was no longer prepared to do my care and i had to stay in hospital until they found a suitabkr care package for me!  This news knoxked me for six! I hadnr spoken to my daughter for days, which is longest we had evergone without speaking. I had been  told there wasnt a suitable phone they could bring me. I didnt know if something had hapened to her, or  someone had spoken to her. We have always been really close, so it devastated me hearinf she didnt want me home.
    Wjen i found out that later on that wasnt true, and she told the socilal worker she wanted me home, and didnt want me in a home, she just wanted them to het a move on with sorting stuff out like they kept promising! so they should have discharched me that day but they didnt do it for another 4 days despite knowing i should have gone home. They did this unlawfully. My complaint against the hospital is totally valid. so i have lots of issues with the hospital over poor care over the last 18 months ehixh i didnt complain about because i didnt havr the energy but , I dont appreciate them lying, and the total loss of my voice,.my rights and my liberty 2as.the final straw .Especially because i think i am only the tip of the iceburg. Thhey tried to do something similar.last year.too, because tjey said thwn even though i was competent, they could convene a panel and have that challenged and force.me to go into a home fpr an assessment period at least. I was shocked thar things like this could happen! 
    My daufhter was well enough toncome.up tothe hospital then though and they dropped it! 
    This time though , they didnt even.mention any of that which means they didn't even try and go through proper channels to do things properly, so if they are lying to social workers about me self discharging they know they are Wrong. It was a bit daft anyway because my paperwork clearly shows the doctors discharged me! 

     When i asked to self discharge,as i was getting nowhere getting them to discharge me they  said I would have to find my own way home,.which obviously, i couldnt, due to having no hoist or xhair available! 
    Nothing that happens at home as any bearing on the hospital situation at all. It was never the case , that we would be given 24 hour care at home,
    As i said in one of my earlier posts i think, they came and did the assessment in a rush like they said they would, promised to pick after clo made the changes, which she did, never heard anything for a week, then got a phone call saying she'd been off for several days! So much for saying it was  a priority yet again!I

    Then said ive redone report can u look at again, and do your replies on there so shr had to redo all of what she did. Then send that copy off! 
    The support is finally being sourced noW. The nhs, have accepted they have made mistakes with our care since we were given chc funding, It should have gone straight frome social services to them without a break and it didnt. 

    The important thing to remember is though when you are seriously disabled and you rely on other people for all aspect of help with your daily living requirements all you want is to be treated with respect, dignity, and a little bit of humour thrown in maybe! Above all.though you want to know you are safe. 
    I had an anaphylaxis .onthe the day before discharge,again if i had been at home, it woudnt have happened because i wouldn't habe been exposed to  latex.
    s

    I dont take.offense at what you say, everyone is entitled to an opinion. The reality is though, the nhs, and  the people .in it are.not alwys these wonderful.amazing people, who are there there because they love their job. For some its time to leave i think. Some are fantastic, bit there are a.fair few who need to relook at why they are doing the job sadly. I
    Being in hospital carries it own risks of making me more unwell with my neuro condition with the hospital is not equipped to deal With at all.

    Even on arubbish day, my daufhter makes me feel safer than the hospital could.







  • tru88letru88le Posts: 95 Member
    Theres no doubt hospitals are not what they should be.
    Not enough staff and qualified nurses seem to be above getting their hands dirty.
  • lucylifelucylife Member Posts: 10 Listener
    I just  just want people to care a little about what they do again. People are at their most vulnerable when they are unwell. 
    I would like for health professionals to remember that just like they are more than just their uniforms, ill, the disabled and the elderly are more than just a collection of diseases, they have lives, hopes and dreams too, and often have had ambition, and have had to ovecome challenges in life and are often still smiling and.dealing with life. So don't just assume, try and have a conversation , you might learn something!.So

    SOorry, My little soap box moment l couldn't resist!
    I am sure there are wonderful people in the nhs, but there are a lot also who just don't care. It is just a job to them.  Reminding them to see patients as  patients as people,a lot of the best people in the hospital seem to be the porters and the Cleaners, they actually talk to the patients, they don't talk over them, they don't ignore them. A lot of staff, seem to forget why they are at work these days. They often talk to their friend and if the patient joins in act as if They are the rude one! .at least on this ward anyway!
    It is easy to blame It on morale or wages  or various other things, but essentially you need a good manager to get things in shape. They can't even get the basics right, so what chance is there with anything else. right

    Interestingly, I can tell whether a nurse trained down here, or not within a few minutes of meeting them on a ward or in the community it shows in their trainng! They need to go back to basics and standardise training across the country. 

    It just seems.a shame that a lot of caring seems.to have gone out of the profession.  Don't get me wrong, there are still one or two.fantastic nurses I met who I have all the time in the world for who genuinely care.about what they do. .I just happen to be in on  bad unit which is not managed well sadly. 
    There is a.ward.in the hospital where the staff are amazing, and despite undergoing a really stressful ng procedure last year that took 8 attempts, I couldn't fault the nursing staff, they were every thing you would expect, and everyone i am.on that ward I feel.safe and well cared for , especially if I become acutely unwell as I did that time.  Unfortunately it is a surgical ward so I don't get that as an option normally..it is an example of a very well, managed ward, though so I know they can exist and it is a very busy ward with many specialialities! 

    Unfortunately, the medical admissions unit and respiratory unit are the other end of the scale! 
    To give an example, I heard a nurse, say that they had been told by the manager to record that they have all the patients their drugs at 6am! That's great, but if something goes wrong, it's that nurses neck on the line, or if that patient doesn't actually get their drug till 3 hours later , and then get a their next dose earlier because someone doesn't realise they have already had it not long ago, especially as they were using a new computer system instead of paper and half the staff didn't know how too use.It so instead of asking for help.were making mistakes instead. 
    Another nurse checked that big brother wasn't checking over them about the times they put in, for the same reason because of the managers asking them to put in same time for all drugs! 

    Then a hca  shouted at an elderly couple for going in to see a relative, without putting on a gown and gloves and said he was barrier nursed and didn't really explain what it meant!  They explained , no one had told them the day before, and she barked at them,  this 20 something girl 👧 I'm telling you now! She then just watched while this poor.old. man struggled to put an apron and  gloves on, and his wife explained he was waiting for surgery, on his hands and no one offered to help or anything! I couldn't believe it!  I thought you are supposed to be a caring profession and look at you! 
    This was just the general way people think it is ok to behave in the ward and it goes unchecked.It was one of the worse displays confusing I have seen, or to be honest of general human behaviour to another and in a hospital no less! 


    When they came in to wash me one day, the person who is like the old enrolled nurse,that they have brought back but given another name lol can't think of her title now, she was like I don't have the patience for this today! 
    I was a bit like seriously? That's a great way to start and it just went down hill from there! When I said what I need for my care needs, she was like, you'll get what your given and I can find!  Its.like fine but I'm trying to make my life and yours easier.

    I just don't get the attitude. , You get others who comment on the smells, excuse me being blunt, or even say about the fact that you have called them for help in that  area and questioned how you manage at home!??? Erm ,,, ,My daughter  Has been my carer for years ....did you not get hand over!!!! 

    When I was finally being discharged as well The ambulance crew went to move me up the stretcher and was about to do a drag lift on me and if I hadn't managed to say stop , nobody else stopped them either which would have caused my shoulder to dislocate. Again, it is just bad training but these things are important as I can't always talk. We 'ok get it sorted I hope. 

    I just question, why they do the job, if they they don't want to do the job, I understand, if  emergency is going off, you having to wait, but if there isn't you shouldn't have to wait an hour or two for them to come and do your care which has often happened or be really unwell when you go home as you haven't been turned or cleaned properly, or they haven't given you the proper meds because they can't use the system properly, and are too afraid of looking silly to.ask, they are supposed to be trained professionals.


    I just want the hospital to start putting in some robust policies so things are done properly and safely and no-one has to deal with what I experienced. 

    I have given them the chance , when I have told them verbally about issues before, and the response from the sister was what would u like me to do about it?!!!  My daughter and I were a little shocked! We said, we didn't just tell you the tea round was cold , we said your staff are not washing a patient properly leading to risk of more infection,  so we would like you to ensure your staff are trained in how  to wash patients properly as i must not be the only patient this is happening too. sometimes they didn't even bother to wash  you , just switch wet pad for dry  excuse blunt ness! 

    So tend to dread very admission now , so if we can manage all my health needs from home .now so we try to do that as much as possible! 

    Most of the time it works thank fully! 


    As I said though to balance it out a bit there are some amazing people who also work within the nhs I have just been very unlucky.

    As I said previously, My son has liver  disease and lives in the midlands, the staff the're have been amazing with him. 

    It isn't easy especially,knowing he will need a transplant at some stage and know keeps having to have veins tied due to coughing up blood so it isn't a nice disease , not that anything is of course! 

    It was.a big shockwaves he was diagnosed, we though he had escaped the genes of.our diagnosis, then he nearly died of some random, inherited autoimmune hepititus which led to cirosis as it went untreated for so long!o

    It did teach us to be thank ful though for what we have, because we never now what is coming  round the next corner, I am a very proud mum,  because despite him being unwell,  he is still wanting to continue training to be an electrician.  My daughter is still doing a degree from home in psychology and they have even inspired me to enrol for a degree module and see  if I can get my my brain working again a little..the jury is still out on that one though. I

    Thank you for taking the time to listen. 

    Sorry about the essay lengh! 

    Hugs 
    Lucyxxx




  • newbornnewborn Member Posts: 682 Pioneering
    Lucylife you and your family sound like great people,  and funny too.   What happens to you is unforgivable  but, sadly,  that's the n.h.s. attitude in many places these days.  

    Your description of the poor old man being treated so badly was heartbreaking. 

    There should be cctv, by law,  in institutions.  There is, by law, in abbatoirs.  Abuse including rape of elderly is commonplace in 'care homes'.

    I'm worried there was a sinister reason  for the otherwise inexplicable prioritising of doing some home adaptations.  The Scope experts will check, but is it possible you are being  tricked and trapped? I had an idea that if they do DFG works, you are obliged to stay for 5 years or pay back the cost of doing it (and taking it out?)
  • lucylifelucylife Member Posts: 10 Listener
    Hi, 
    Nah,.We're just pretty normal, really! I just get really frustrated When I see people,  being treated badly by those Who should knoW better. I dont understand Why it is so hard for people to just be nice and caring  to each other, Especially those Whose choose to go into caring as a career. The clue is in the name!  It takes a lot less energy to be nice than it does to be mean and stressful to people doesn't it! 

    With dgf's it varies Ith councils, some it is five years and some it is 10. That rule.Was mainly brought in to stop people taking advantage from What i gather. 
    I am aWare of people moving only months after having been gicen a grant also. 

    I think it Was brought in to stop people getting repeated grants, Particularly in the case of large families in some areas, advantage Was being taken of the system. 

    There is a clause.in the system, Where if there is genuine reason beyond your control, Where you need to move, for health reasons  you Wont have to pay back any grant been given for instance.

    For example in our case, these Works should have been done over a year ago, but due to failures again, on various peoples part  it didnt happen, so suddenly everything has been rushed through ad hoc,! It is crazy as it is  costing a lot more money than it probably should have if it had been thought through properly, rather than just all in a  couple of Weeks. I mean, they are rippping a bathroom, out to put a new one in

    Dont get me Wrong, the builders.are amazing, they are doing a fab, Job! its When the ot's  get involved start coming out With  daft things! she told the builder today , he didnt need to bother covering the pipes.up in the bathroom, he Was.like,.erm ,yes i do!!! It's my reputation! , i'm not half a job harry, you know! 

    Sorry,.but i did find it hard not to laugh out loud When i heard! 

    Although i do think it is important to develop a.sense of humour if you havent got one pre disability, because lets be honest your gonna need one after if only to deal With other peoples attitudes, 

    I alWays Want to start singing'always look on the bright side of life' and  Want to Whistle When i hear that oh my gosh, noW you Will think i am a looney, in my defense it has been a long day and i disnf sleep last Night at all , maybe i Will get a little sleep tonight, i can only hope lol

    With regards to the dfg though in our case as i Was saying as i am in quite a high chair apart from having a ceiling track hoist all of our adaptions in the bathroom and kitchen are pretty generic  as Well.so Will benefit anyone moving in after us Who is in a poWer chair. We did that on purpose to make it easier, and the council cant really complain as the adapted property Wont go to Waste! 

    As far as im aWare you cant sWap With some one unless they need a similar property and have a similar need to you disability Wise too. 

    I think because there has been such a catastrophic failing in almost every aspect of mine and daughters care and they havent even completed the complaints process in time that have already gone through from last year regarding issues, Which We know, is partly then gone on to impact on the other problems We have noW, and rhat is before the latest hospital stuff, so With all thst combined , if a suitable home someWhere else does come up I dont think anyone can object to it if it means We can  be near a neuro specialist centre  and then doctors that specialised in other conditions to  so my daughter can finall be properly, assessed for the first time in a couple of years, and get her treated, and maybe she Will have  a  bit of energy for life.agsin like most young adults

    Oh gosh i do go on at times.dont i, just tell me to shut up if im bugging u at times! Nicely though! I can be a sensitive soul Who over analyses thing's ,and then sits cross legged 2ith her boW all a
  • lucylifelucylife Member Posts: 10 Listener
    Lol i pressed sent by accident! I Was  just gonna  finish by saying i sit there overthinking everything, sits cross legged With a boWl of corn flakes  curling my hair Well not so much these days lol 

    On thzt lovely image.i Will depart and leave  you all.in peace fimally!

    Teke care. Love.and hugs xxx
  • pollyanna1052pollyanna1052 Member Posts: 1,998 Disability Gamechanger
    Hi again Lucy. I haven't got the strength to read all your replies...but I did the one to me. Been sewing and overdone it. My left hand kept telling me it had had enough.

    Just want to say good luck with the brokerage.

    I was offered this but declined.......sounds like many different carers will appear....then you have to tell every one of them, how to do things your way....repetitively!

    I have had 5 carers from my new agency. It is usually shared between 3 but can change at last minute. They are all good and kind.

    Pollxx
  • lucylifelucylife Member Posts: 10 Listener
    Thank you. I hope your pollyanna1052 said:
    Hi again Lucy. I haven't got the strength to read all your replies...but I did the one to me. Been sewing and overdone it. My left hand kept telling me it had had enough.

    Just want to say good luck with the brokerage.

    I was offered this but declined.......sounds like many different carers will appear....then you have to tell every one of them, how to do things your way....repetitively!

    I have had 5 carers from my new agency. It is usually shared between 3 but can change at last minute. They are all good and kind.

    Pollxx
    Thank you,
    For taking the time to reply.
     I hope your okay, 
    I don't sleep much unfortunately, so there is too much going on in my head in the night lol

    Sadly we thought, things were being sorted  out as promised from meetings and emails, and they had agencies ready, my daughter chased up yesterday, and was told, these aren't now available, but that she was going to get into it either tomorrow or the next day!   So my daughter was like erm... Tomorrow!!! We need this doing now as you promised when you agreed it was a priority!

    It isn't nice having to be firm with them, but they are clearly under even more pressure now, but that shouldn't stop them having to get my care done urgently as agreed as we have been waiting so long. We have even said work with us to get pa:s in place. What is frustrating is there is not the the momentum  in place. Apart from the money they are putting in each month , there is still £20 000 from the last six months that hasn't been spent on anything As we didn't know it was there, so we just need help finding the carers! 

    Once it is sorted out, I'm sure, my care will work really well, especially if we have personal assistants, who we can train out selves. 
    I have just been reading about how you can use personal budgets to work for you and they sound really good in theory and if they are used the way they were intended, rather than just another way of passing the buck and  saying if anything goes wrong with your care them  it's your responsibility and we won't be liable for it as you are now responsible for it, which is generally what has become the case here, rather than seeing the personal budget can actually extend people's horizons and improve health if used in the right way. 

    I have tried before, but with limited success.I think the key to anything is just making sure we are properly informed ourselves as we can't always rely on the nhs or social services to inform properly. It isn't always their fault, as they don't always understand how everything works themselves and can't always see outside the box. 

    Sorry, I know you said you get  tired, so don't worry if it's too much to read and take on, as I said, I tend to go on a bit at times when my brains jumpy, not sure why! 

    I will shut up now.

    Love and hugs 
    Lucy.
  • newbornnewborn Member Posts: 682 Pioneering
    This is a good thread. Lots of info, and insight, and very funny too.   
    Who wouldn't love the  wonderfully incongruous image of the  poster ' cross legged,  with a bowl of cereal, curling my hair' ?
    Thanks for that!
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