Tired of being let down

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

 

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