All said & done I've had a lousy life & just as I was starting to get some sort of a life worth living everything went seriously wrong.
Over the past few months I've come to realise that much of the NHS isn’t really that different to Twitter in the way it interacts and behaves.
It would seem that if you're honest and don’t exaggerate your symptoms and you’re not a “revolving door” patient continually turning up at A&E for every little thing, attention seeking & you do your best to cope then you’re not respected by many in the NHS.
But then it's not just the NHS who behave so deplorably many other organisations think deplorable behaviour is acceptable. Whatever happened to respect?
We're in the 21st century with many different ways of communicating and yet communication has never been so bad.
CMHT interference
Even though I wasn’t their patient the CMHT interfered and stopped my care package without warning even though they knew and could see I had deteriorated and was more than entitled to continuing care. Yet when I queried it with social services they in effect shrugged their shoulders and said they couldn’t interfere with any decisions made by the CMHT.
Delays to essential work in the flat
Over the years my housing association have really messed me about refusing to to do the repairs and then when they finally deigned to do the work they further delayed getting on with the work needed. After 10 years with no access to bathing facilities they did the bathroom and then there was a further delay before they replaced the temporary kitchen of more than 35 years and didn't finish until just before Christmas 2019. Well I say finished neither room has actually been finished but they were at least both usable after a fashion.
The delays in finally doing both meant that my health was already starting to further deteriorate and Christmas 2019 I was so ill I could barely move. In the new year I tried to get the contractors back to finish the work, they kept coming back with the wrong things or ignoring me. I was also trying to sort out the hospital appointment for my lymphoedema as I had been sent to the wrong department after 10 years of fighting to get the GP to refer me - but unfortunately we went into lockdown before I was able to get the correct appointment.
Lockdown and it's consequences
Unfortunately lockdown really was the beginning of what will be the end for me.
I went into lockdown at a distinct disadvantage, the flat was in a mess because the housing association delayed the necessary work by decades and my physical health was rapidly deteriorating because getting the NHS to do anything takes so long.
Initially I couldn't get an online grocery account and so couldn't get any groceries delivered when I finally did it was short-lived because they stopped bagging the shopping. I couldn't manage to carry the crate upstairs or bend down to unpack the crates and at that time they wouldn't do it for you, so it meant once again I was unable to get grocery deliveries
So once again I ended up with a period where I was unable to get grocery deliveries. It meant my diet became extremely erratic which in turn exacerbated several of my medical conditions
I then started getting harassed by my housing association to let someone in to do the electrical safety check, which really annoyed me as they had already done the safety check and declared the electrics okay and that no work was required but obviously the company who had performed the safety check hadn't documented it. Not my problem!
Then the housing association realised I was a vulnerable adult (only took them a couple of decades to work that one out!) and said that they would keep in touch with me for my safety and would help me if I needed any help. Ha ruddy ha.
Prisoner in my own 'home'
Because I was unable to access treatment at the beginning of lock down my already poor physical health rapidly deteriorated as did my mobility. Prior to lock down managing the stairs had been a problem but it was manageable, albeit with difficulty, especially after each treatment. But no treatment meant my mobility seriously deteriorated and at times it wasn't safe to attempt the stairs especially as I had had several bad falls down the stairs or ended up simply not able to get back up the stairs regardless of whether I've fallen or not.
Not only am I now housebound but because of my medical conditions and the injuries I have frequently sustained once I get the treatment I need to improve my mobility I’m probably going to have problems getting out of the house because my epilepsy and OCD. The only reason I was managing it, albeit with difficulty, prior to lock down was because I was practicing going out several times a week. But now I’m frequently unable to get down the stairs to open the front door and my housing association are fully aware of this and at the beginning of lockdown repeatedly told me I was a vulnerable adult and they would keep in touch with me and do all they could to help. Did they f**k as like!
But I soldiered on and I didn't phone for ambulances or keep ringing the GP or any of my consultants because I knew they were really busy dealing with Covid. Obviously that was a big mistake. Several times during lockdown I really should have called an ambulance considering what happened, but it’s not in my nature to go running to A&E every time I have a seizure or an accident. JC if I did that I’d spend my life there. Plus during these difficult times I know how over worked and short staffed the NHS is and didn’t want to add to their burden.
I’ve tried to be considerate and I’ve done my best to manage all my life and as a result I’ve been kicked in the teeth by the very people who should have helped.
Empty promises
In the autumn of 2020 my gas safety check was due but because of lockdown it was postponed. Nobody shouted at me, harassed me or complained because we were all protected by the covid regs especially those of us who are CEV.
Then at the beginning of 2021 once again I was told you're a vulnerable adult we will keep in touch and once again their idea of keeping in touch was to ring a couple of times and that was it.
When we first went into lockdown I was repeatedly told if there's anything we can do to help let us know. So I asked for help with several things and was either ignored or told yes we can help with that and then that's the last you hear!
Since beginning of autumn last year the only help they've offered is to repeatedly tell me to throw the key out of the window or to give it to somebody else. Because I won't do either of those options I've been told I'm refusing help! Would you throw your front door key out of the window complete stranger? Would you trust somebody you didn't know to lock the front door behind them when they leave when you can't see the front door? Well no and neither would I!
Kicking someone when they're down
By the autumn of 2021 everything changed. I was told my gas safety check would be due soon, in fact it was due a couple of days before Christmas and I had told them multiple times that I was unable to manage the stairs and that I also hadn’t had my booster injection which I needed as I’m classed as CEV. I told them multiple times that as soon as I was able to manage the stairs and had my booster I would be in a position to let them in. “No problem...” I was told then all of a sudden last November all the phone calls stopped. I thought nothing of it because I was busy simply staying alive especially as I was unable to get down the stairs to get food in.
I struggled down the stairs on 22nd December 2021 for a grocery delivery and there was no post. The next time I was able to get down the stairs was New year's Eve for another grocery delivery and waiting for me on the chest in our communal hall was a hand delivered envelope containing a court summons for 5th January 2022. I rang the housing association as I knew nothing about this, further more the housing association knew I was unable to get down the stairs to get my post so if there was a problem why hadn't they rung, emailed or sent me a text?
My housing association had not only ignored reasonable adjustments etc under the equalities act but had started proceedings weeks before the check was actually due! They knew I was unable to get down the stairs to get my post but had made no attempt to let me know what was going on. This all came as a bolt out of the blue and really distressed me.
When I rang them I was told there's nothing we can do until Tuesday as the solicitors are away for the New year but don’t worry we will ring you on Tuesday.
Bear in mind there is nowhere open over the Christmas/New Year holiday period to get any help or advice this was just sheer spite. No one rang me on the Tuesday I had to bring them and was told it was going ahead anyway the court case.
The court case was the following day by phone and I emailed them my phone number as instructed in order to attend. I checked my phone with working which it was and I sat there like a lemon waiting for the phone to ring in order for me to attend the case and put my case to the court. The phone did not ring and towards the end of the afternoon I rang to ask why and was told the case of being heard as I hadn’t answered the phone. I had already checked before I rang the court to see if anybody had rang by dialling 1471 and I was the last person to ring me.
I had to wait to find out the verdict and apparently I have been found guilty without being able to defend myself. If I want to defend myself I've got to pay, as it is I’ve been fined over £900 for being disabled.
Once I was able to get down the stairs to get the vaccination and waited a fortnight as advised by my doctors I had the gas safety check done and still have not received the certificate even though the law says it has to be given to me within 28 days. I had to ring to find out where certificate was
They know they’ve upset me and yet nobody has bothered to contact me to find out if I'm ok despite them making a big hoo-ha about me being a really vulnerable adult!
Now I'm being harassed by different contractor wanting access. I tried contacting the housing association and was told it was property services I needed to speak to but they weren't available and somebody would ring me back. A fortnight later when no one had rang me back I was then told no it's the safer homes team. The person spoke to that team and then came back to me and said they're not available someone will ring you.
FFS if I haven't been able to get downstairs for a food delivery for 5 weeks, so if I can't do that what makes them think I can get down the stairs for anything else? I don't do this for fun! I said you when he cannot manage the stairs and no one gives a flying f**k!
NHS
The NHS has played pass the parcel with me most of my life and just as I was starting to get somewhere with consultants who are willing to do something we went into lockdown and all the sudden I got nothing other than a few phone calls and back to the usual empty promises. I was left with no treatment, no analgesia, no blood tests and so no injections and my tumour totally ignored. As a result my conditions have seriously deteriorated severely impacting my mobility
Then there's the consultant who thought it perfectly acceptable to write a letter full of BS.
- What is the point of asking the patient questions if you’re not going to listen to their answers?
- What is the point of the patient emailing details as requested by said consultant if he then goes on to ignore them?
- Why do consultants make promises which are either not within their remit or they have no intention of keeping?
I was foolish enough to believe my consultant when he said he would help arrange transport for me to get to the lymphoedema clinic appointment. But he didn’t so I couldn’t attend the appointment and then he had the gall to accuse me of failing to attend.
I've got a GP who it would seem doesn’t even know what day of the week it is. They ignore request by the consultants, delay urgent referrals and won’t do either my urgent bloods tests or injections. As for the Covid vaccinations I had to get the CCG involved. It’s partly my GP’s fault I’m housebound and yet they are reluctant to do anything unless pushed by the CCG.
Perhaps if the NHS had provided me with the treatment I needed, when I needed it and the housing association had replaced the roof, windows, & the temporary kitchen and provided me with access to bathing facilities etc when needed without me having to continually nag for decades I wouldn’t be in the mess that I'm in now.
DWP
Late spring 2021 I received the review form from the DWP for my PIP and because we were in the middle of covid we were given plenty of time to fill it in and return it. I filled in the form well within that period of time and returned it. As I'm housebound I had to rely on somebody else posting it and they wouldn't go into the post office at that time so I couldn't get a proof of posting. After couple of months when I heard nothing from them I contacted them and they said they hadn't received it so they sent me another form which I duly filled in and sent off.
Once again I didn't hear anything so I rang them and was told they hadn't received that form either. After spending hours trying to get through to them by the time I did it was November 2021, they said they would send another form but in the meantime my benefits had been stopped even though the assessment period wasn't up until February 2022.
On both occasions I had had to spend more than 40 hours on the phone on and off trying to get through to them and needless to say I can't get through to them tell them the third form didn't arrive.
This couldn't have come at a worse time as all my conditions in particular my bladder and bowel conditions and OCD had seriously deteriorated not help by all of this stress. I needed that money simply for all the the extras I need in order to survive from day today because of all the extra costs my medical conditions incur.
Housebound so unable to access any healthcare
I'm housebound and so frustrated because not one person in the NHS will do anything to help me get my mobility back so I can get out. All I get are empty promises and passed onto the next team
- The week before lockdown I'd started treatment at the dentist but the rest of the appointments got cancelled because of lockdown meaning the treatment wasn't finished as a result I've got broken teeth and lost a crown.
- I need to get my eyes tested because my vision has deteriorated and the glasses I've got are no longer effective
- My mammogram and smear and now overdue as are are the various blood tests I need for my medical conditions.
- I can't access any of the treatments I had been having, so as a result my conditions are rapidly deteriorating
- I'm climbing the walls in pain because all my analgesia was hospital based because of my medical conditions and no one has provided me with an alternative to use at home despite me repeatedly asking. This has also severely impacted my mobility.
I’m too old and too ill to continue fighting for my rights with no support from anyone, my family disowned me when I was of no further use to them once our parents died, I have fair weather friends who only want me for what I can do for them and if there's any chance I might need a bit of help you cannot see them for dust.
I have finally managed to get my MP on board but I fear is possibly too late.
It doesn’t help that I’m the wrong sex and therefore always the wrong age, I have the wrong medical conditions that would seem I’m the wrong everything.
I'm exhausted physically and mentally, every task takes infinitely longer than it used to and I have to keep having a rest every 5 minutes.
This isn't living it's simply existing in considerable pain and I've had enough!
I don't need to commit to suicide because either my medical conditions will shortly see me off or I'm going to starve to death.
