Why don't you listen?

Why is it so many youngsters in the NHS are incapable of actually listening to patients?

I was asked how my epilepsy, FND and OCD were I replied “They’re considerably worse but at the moment I’m just about managing to cope.”

So that was translated as “no change in her epilepsy, FND or OCD” in the clinic letters.

At that last appointment back in July 2021 I was just about coping. But now my OCD has got considerably worse because of the aggravation with both the housing association and that idiot of a consultant primarily because their behaviour has considerably exacerbated my epilepsy. And for the first time ever stress is actually making my FND worse usually my FND tends to interrupt when I’m relaxed and/or enjoying myself.

It also doesn’t help that my physical conditions have deteriorated to the point where I need to wash & change clothes frequently the effort of which makes my physical conditions deteriorate even further. Most of the time it’s all I can do to get pants and a t-shirt on.

I was also getting to the point where standing to prepare food and cook it was becoming difficult but then an incident in the kitchen triggered my OCD and now simply going into the kitchen sends my anxiety levels through the roof and triggers my OCD big time. So, most days I tend to avoid the kitchen because of the stress it causes which in turn triggers my epilepsy.

Having a pulse in the low forties and being physically exhausted by the simplest of tasks such as keeping me fed, watered, clean and preventing serious infections is taking its toll, it also makes me confused resulting in me feeling so unsure of what I have or haven’t done and so exacerbates the OCD.

And before anyone says anything it’s not easy when you have two conditions that aggravate each other. When my epilepsy is poorly controlled it makes my OCD worse because of the uncertainty it creates. My OCD demands certainty and my epilepsy creates uncertainty.

I was doing so well with my OCD and proud of what I’d achieved but a combination of lockdowns resulting in deteriorating mobility and being unable to access treatments I need has left me in one hell of a mess and trapped upstairs unable to get downstairs to my own front door. I can’t even manage to shower daily as

• I’m not up to it either physically or mentally 

• I can’t manage to move all the rubbish bags, I’m having to store in the bathroom as no one to help me put the rubbish out, shower then move the bags back into the shower.

I’ve spent my life doing for others in one way or another but when I need help EVERYONE runs a mile before I’ve even asked.

Having said that the supermarket & their delivery guys have been fantastic, they never quibble about having to put my shopping in the bags I provide so I can then haul them up, in fact we’ve had a good laugh about it as they’ve never had to do it before. They are also concerned about my general welfare & always ask if I’m okay & if I need them to contact anyone to help. This is more than either the NHS, HA or SocServ have done, they’ve just left me to rot.

I can’t cope with this either physically, financially or emotionally anymore especially with no ongoing treatment for my physical health or any support. 

As patients you're damned if you do and. . .

Reflections on more than 60 years interaction with NHS.

Seems each time another way to communicate is introduced the poorer communication becomes in the NHS.

When I started training there was only face to face, post, phone and of course the NHS favourite the fax. Internally doctors were called by paging them.

Now we have face to face, post, phone, mobile phone, text, email, video calls & many hospitals have patient portals yet communication is worse now than it’s ever been. I don’t think we can blame technology for the piss poor communication I firmly believe it’s the system and staff to blame. Nobody listens and nobody cares!

When I was a kid the family doctor had time for everyone, didn’t humiliate them or make empty promises. Where I grew up GPs mixed with local NHS consultants both professionally and socially not so in London.

When I started my training back in the seventies consultants still considered themselves to be Gods, thankfully we were moving away from that but unfortunately seems we are moving back to that time. Far too many youngsters are more interested in collecting academic degrees and awards than dealing with patients especially if the patient has complex physical health needs.

All my adult life it’s been me who has kept me alive and no one else. I’ve repeatedly had to tell health care professionals “I have X, Y or Z…” and been completely ignored until it’s too late, furthermore I’ve been proven correct each time. My original couple of health conditions that were neglected gradually created more and more problems until I now have an A4 page of diagnoses most of which could have been avoided had the original conditions been treated promptly and appropriately.

Whilst I fully appreciate the restrictions placed during covid were necessary to protect us all, had I received timely and appropriate treatment years ago I wouldn’t have started the pandemic at a distinct disadvantage.

So, the treatment that helped keep me mobile had to stop during lockdown as no face to face appointments were permitted BUT no alternatives to the hospital based treatments were provided and once lockdown was ended they then imposed further restrictions for instance seeing the backlog of certain patients first then people like me. By the time that was well under way the rules changed once again meaning I needed a covid vaccination. Bit difficult as by this time my mobility was seriously impaired so unable to get out for a covid vaccination instead had to wait for a home visit. Initially the nurses refused stating I wasn’t written up as being housebound and by the time I did manage to get the vaccination once again the NHS had moved the goalposts.

From the first lockdown I asked for temporary alternatives to the hospital-based treatment I’d been receiving by was repeatedly ignored by both various consultants, GP and the GP surgery’s pharmacist.

So, because I didn’t receive the treatment I needed years ago my physical health has rapidly deteriorated along with my mobility. So, the lack of appropriate & timely treatment then going into lockdowns has meant that without temporary interventions from the hospitals I am now immobile and stuck upstairs unable to get down to open my front door. So, because I’m immobile the hospital won’t now treatment.

Yes, folks you heard correctly – the NHS has created my mobility and has now washed their hands of me. I’ve either been discharged or it’s the usual “We can’t do anything until X has done their bit” Problem is X then won’t do anything as waiting for Y to do their bit first and so it goes round and round with me rapidly deteriorating as no one considers it to be their responsibility to do anything!

I desperately need bloods taken and depending on those results adjust my medication and also get the injections that are long overdue.

I also desperately need analgesia and help to get out of the house and to hospital appointments. But until things settle down with my physical conditions I won’t be going anywhere.

My smear and mammogram are way overdue and I desperately need the dentist and optician. But instead I’m stuck indoors unable to even get down the stairs and I am deteriorating rapidly.

I know that things are now hopeless and I’m not going to get the help I need so will die stuck in this shit hole so my OCD has suddenly got a lot worse and for the first time ever anxiety is making my FND worse.

Can I get any help from local organisations?

Can I heck as like! I don’t fit into any of the minorities they deal with.

Okay I can get groceries delivered and the supermarkets will work with me to ensure I can get the shopping in via the kitchen window over the front door, but there’s no one to turn to in order to get the rubbish out.

I suppose I could just throw the bags out of the window on the morning of bin collections but what happens if they go straight past me like they frequently do or the day of collection is changed like it has been a couple of times this summer?

I can’t leave the bags on the path as the cats and foxes would tear them open and then what?

I can’t get down to clear up the mess and apparently, we already have a rat problem in this area because of the drains. The scaffolders were great and put out some of the rubbish but they’ve now gone so once again the bags are mounting up in the bathroom.

If I can't get the help I need then I'll just throw the bags down the stairs as I can't use the stairs. Will mean when I go they'll have to access the flat via a window!

Not my problem!

 

I've hit a brick wall. . .

 This will probably be my last post.

I have repeatedly asked for help and either been ignored, told it’s not within their remit but so and so will help or been given impossible suggestions as to what to do.

You wouldn’t credit that I have five consultants, it used to be nine until CCG interfered and stopped funding of two consultants (typical they were the most helpful ones) and two were stopped as one of the remaining five actually did the tests required to establish a correct diagnosis making the other two irrelevant.

Covid-19 was a golden opportunity for some in the NHS to do what they do best: that is pass the buck. Okay initially when the pandemic struck there were understandably no face-to-face appointments unless it was covid or a genuine emergency, but some took advantage of that and used it as an excuse to get rid of patients.

So, appointments were changed to phone consultations. Not a lot of help when those appointments were for regular tests and treatment. All my analgesia was hospital based as the consultant had always considered that to be the best option, so at that first phone consultation I asked for a temporary alternative whilst there were no face-to-face appointments and was completely ignored. I also asked my GP surgery multiple times for an alternative but completely ignored, instead the surgery pharmacist kept messing with my epilepsy medication, at one point they changed the prescription to one 400mg capsule daily – I take two 400mg capsules four times a day as per the consultants’ instructions which incidentally haven’t changed!

Then another consultant kept writing to the GP asking them to do the blood tests and if the GP was not sure of dose for next injections to contact them and they would advise. Ha ruddy ha, both the hospital and myself have been trying multiple times since 1999 to get the GP to do the tests and injections and they’ve either refused or simply ignored us. Finally, this summer the GP has consented to do the blood tests, but it’s too ruddy late as now I’m not just house bound but I’ve been trapped upstairs unable to get downstairs to open my front door since February 2022.

When they were able to restart face to face appointments, I was told I needed to have a covid vaccination, then when I finally got that goal posts had changed to needing second vaccination.

Three of my consultants are simply passing me around like a parcel and two of them have discharged me having provided no treatment whatsoever despite telling me “Don’t worry there’s plenty we can do to help such as X, Y or Z…” I was even discharged by one of the consultants for daring to make a serious official complaint regarding a letter written by one of his colleagues.

Meanwhile I’ve deteriorated to the point where I can’t manage the stairs, I am in so much pain and exhausted that I can only do tasks in short bursts before I need to rest. I also think I’m developing dementia or similar as I'm in a severe cognitive decline. I told my neuropsychiatrist who laughed and had the temerity to put in the clinic letter a lengthy rundown of what he said to me regarding my dementia concerns (BTW he didn’t say any of what he wrote in fact he said sod all). Result is I'm getting into more and more of a muddle and no one gives a damn.

Since first lockdown in March 2020, I’ve had no treatment whatsoever but plenty of empty promises from various NHS staff. The very people who have created my immobility now won’t see me because I’m immobile!

I am sick to death of asking, nay pleading, for help and getting nothing other than facetious comments or being totally ignored.

Let’s see, thus far since the first lockdown:

I’ve been prosecuted by my housing association.
My crime?
Being disabled, ironic considering they were set up as an organisation to house disabled people. 

I had PIP stopped because the DWP lost two of my review forms and then failed to send a third form. 

I've had many weeks where I've been unable to get grocery deliveries either because of no available slots or because I was too unwell to manage the stairs. I have now come to an arrangement with two of the supermarkets whereby I lower a bag on a rope out of the kitchen window.

I’m struggling because some of the items I need for my physical health I can’t get as the only supermarket who sell them now won’t deliver as I can’t get down the stairs. 

I'm unable to get down the stairs therefore having problems getting rubbish out and in to the bins. Ended up with fourteen bags in the bathroom. Fortunately for me the scaffolders filled the bin with as many as would fit each time they came. Still got five bags in bathroom and no way of getting them out. 

There are many things I need, not want or would like but need, for my physical conditions but am having to do without either for financial reasons or because I can’t access them especially delivery wise, but the bare minimum I need for my physical health conditions alone cost me nearly £60/week! 

HTF am I supposed to manage with no PIP?
Simple answer is I can’t hence reason I’m getting ready to leave. 

And I hope it gets those who f*cked up into serious trouble.

I desperately need the dentist and the optician and my mammogram and smear tests are now way overdue. But there’s nought I can do when I can’t even get down the stairs to my front door let alone out of it.

If I still lived where I was brought up I'd know where to turn for help.

In fact there'd be plenty of help; friends, neighbours, GPs, various voluntary organisations etc but where I am now there's nothing unless you fall into one of a few categories and unfortunately I don't. I'm not a convicted criminal, psychotic or an ethnic minority etc so there's no help available for the likes of me.

I can't even get support from my so called peers and that really hurts given how much time and effort I've put into supporting others with OCD over the years. But I suppose with that past experience I should have known better. . .

I'm not what is called a revolving door patient, in fact I avoid going to the GP unless absolutely necessary as don’t see any point and the only times I’ve been to the Emergency Department four times this century has been because:

Once because I was taken really ill whilst out shopping, turns out it was a severe hypoglycaemic attack which I hadn’t recognised especially as I had been eating appropriately. 

Three times for severe reaction to mosquito bites resulting in cellulitis and sepsis.

Whether you work for the NHS or any other organisations that are supposed to have a duty of care to the vulnerable please note making smart arse remarks or suggesting the impossible isn't by any stretch of the imagination what could be deemed as helping someone neither is making empty promises.

So, when someone who despite having multiple serious physical conditions isn’t a frequent Emergency Department attender tells you they’re unwell and deteriorating fast then

LISTEN TO THEM AND DO SOMETHING CONSTRUCTIVE FAST!

Don't ignore them or discharge them to get rid of them.

I've clung on for as long as I could with no help or support coming from anyone but it's all become too much for me.

I can no longer afford this either financially, physically or emotionally.

May I be forgiven...

We are not your path to fame and glory. . .

I'm now in a situation where are lack of treatment since the start of the pandemic has rendered me immobile and now because I’m immobile I've been abandoned by the NHS. 

Okay, initially treatment had to be suspended because of Covid and there being no face to face appointments but I asked multiple times for temporary alternatives and was not only ignored good morning occasion had the phone put down on me.

Those temporary alternatives would at least have kept me going until such times as the hospital was back to face to face appointments.

Not having any treatment during that period meant my mobility gradually reduced and it has now got to the point where not only am I housebound but I am now trapped upstairs unable to get down to even open my own front door.

So the very people who have created my immobility have now abandoned me and guess why folks. It’s because I’m immobile!

Quite a lot of what I have wrong with me had they been treated at all let alone promptly and appropriately would have been either curable or reversible. Instead continual delays over the years by the medical profession has meant most of my conditions are now irreversible.

To cap it all I have now been well and truly shafted by an NHS Trust. I complained about a clinic letter written by a consultant which was almost entirely factually incorrect. And when they finally investigated and sent their response that too was also factually incorrect. So I pointed out the errors and awaited their response.

Nearly 4 months on despite me contacting them several times I still haven’t received that final response. At the beginning of May 2022 I was told repeatedly they were drafting a letter and now this week I have been told they were waiting for the appointment I had on the 30th of May before making a final response.

Why? The appointment has no bearing whatsoever on the complaint, I was complaining about a clinic letter made by a different consultant. A clinic letter that was written back in September 2021 so including whatever transpired in an appointment with a different consultant in May 2022 is like a rape case going to court and the victim being told but you had sex yesterday, there's no relevance to the case.

Gone 17:00 Friday afternoon I got a phone call from that second consultant's PA wanting to know if I'd read the letter they sent by email.

She also told me he’d made another appointment for me and it’s at the hospital face to face. When I said I'm housebound I was told that’s okay as he’s arranging to send a taxi for you. I was really fuming as I had quite clearly told him on more than one occasion at the last appointment that I was not only housebound but now stuck upstairs unable to get down to the front door. I mean how the hell am I supposed to get to a taxi if I can’t get down to the front door? Am I supposed to teleport?

And there was me stupid enough to think that he was actually listening to me at that appointment, perhaps he was but that case he’s obviously got a bloody short memory!

Up until now I haven’t looked at the clinic letter he sent for approval as I don’t think my nerves can take much more. **

Things clinicians need to bear in mind:

So much money and time is wasted in the NHS simply because staff do not listen to what the patient says  

And if they do actually listen they then go on to cherry pick the bits they want to take forward and deliberately exclude the rest

Listen to us and that means listening to understand not simply to respond or to further your own agenda

If a patient says X then that is what you document not what you think the patient should have said  

Too many clinicians also rely too heavily on what others have written in the notes regardless of whether it’s true or not

Stop playing Chinese whispers if you’re told a fact is incorrect then correct it and don’t continue to compound the issue by copying in the incorrect facts

As patients we come to you because we need help not to further your career 

It’s not the 19th century when there were very few educated people such as doctors, lawyers, clergy etc

Most patients these days are not only well educated but also savvy especially those of us with long-term conditions

We’re not part of some massive great experiment to further your career

First and foremost we are human beings in our own right we’re not simply guinea pigs.

If what we have wrong helps further your career that’s a bonus, your first consideration should be our health and wellbeing not your bloody career

We are not here simply to further your careers

What you’re providing is ours by rights it’s not charity

Over the years I’ve had some good doctors but I’ve had far more in the way of atrocious doctors who were totally incapable of listening intelligently.

Yes I am annoyed and I'm entitled to be annoyed because it's my life we're talking about not simply a career and why should I pay the ultimate price simply because people would not listen to me?

Having said that I think it's too late I think I've paid the price.

** 

Since writing this post I've had that second appointment with the replacement consultant via MS Teams. 

It's as I thought none of the promises previously made re: way forward and treatment have been or are to be followed up.

It's as I thought none of the promises previously made re: way forward and treatment have been or are to be followed up. 

He spent the whole appointment looking around his room rather than at me and then despite knowing I needed help to proceed especially as all the aggro had made my epilepsy, OCD & FND worse increasing falls etc which in turn has seriously impacted and exacerbated my physical conditions.

He was also aware I was suicidal yet felt it okay to say with glee he wouldn't be making another appointment as there was nothing he could do to help.

So they get me into this mess but they get to walk away!

My biggest mistake was not becoming a revolving door patient as it seems the more you try to help yourself or lighten their load the quicker they'll crap on you from a great height.

I have now reached the end of the line. Shame I don't have access to a prescription pad or the forms for requesting tests etc because then I wouldn't be in this mess.

My cunning plan works

Update from my previous post

As Baldrick used to say "I have a cunning plan!"  Yes, I did have a cunning plan and my cunning plan works to a certain degree.

I managed to get two of the cheaper supermarkets to agree to help by putting my groceries into the bags I provide so I can winch them up and into the kitchen window using the rope and carabiners I purchased.

And it works, it means I no longer have to starve and I'm nowhere near as exhausted as I was when I used to have to go up and down the stairs multiple times for each delivery. 

Which is just as well as I haven't been able to manage the stairs since mid February 2022.

But it does have its limits. I can only rely on using this method for groceries and for medication from the local pharmacy. With any other deliveries it's difficult as so many companies including Amazon don't allow you to give delivery instructions and won't give you the parcel unless you open the front door.

But it's a start. It's just a shame I personally can't get up and down using a basket and a rope.

I have a cunning plan...

To quote Baldrick: ”I have a cunning plan..."

It has been almost 7 weeks since I was able to get down the stairs for to open the front door in

order to get the food delivery in. By that time I was becoming really desperate not only had I completely depleted the contents of my emergency food cupboard but I was also running out of household essentials.

I had already experimented with getting my prescription in. One of my kitchen windows is over the main front door so I opened the window and lowered a bag down on a string to get my prescription in. It made the guy who delivered it laugh as he’d never had to do anything like that before.

It then got me thinking could I perhaps if I planned things carefully do similar with food especially bearing in mind there’s a minimum order of £40.

Well I won’t be able to do it with a bag on a piece of string as the string wouldn’t be strong enough, a few packets of tablets weighs next to nothing compared with what a shop would weigh.

So on the very day that 7 weeks had passed since I was able to get downstairs I managed to get a delivery via Sainsbury’s chop chop app, unfortunately I was still using the bag lowered on a piece of string and the string through the handles pulled tight making it difficult to open the bag and the guy was not particularly amused but nevertheless he complied and I managed to get some food in for the Easter weekend.

A few months into the pandemic my housing association had asked if there was anything they could do to help bye then I was already struggling trying to get up and down the stairs with food so I seriously suggested the following put a block and tackle outside my kitchen window so I could get the shopping in without having to go down the stairs they laughed and then ignored me.

Anyway I have ordered a rope and some carabiner clips, it won’t be as easy as if it was on a pulley but I’ll have a damn good try. It means choosing shopping carefully so there aren’t too many heavy items in one shop.

As I said to the lady at the Samaritans when I have a grocery delivery I have to go up & down stairs for that one delivery the equivalent of me going out every day for more than a week. Now if I don’t have to keep going up & down stairs to get grocery deliveries once I’m able to manage the stairs I can go out to get some fresh air rather than simply going up & down to get groceries in.

Plus having to go up & down stairs for the groceries on the occasions that I’m able I have to rest for 2 days beforehand & then it takes me 3 or 4 days to recuperate which virtually takes up the whole week leaving me unable to do anything else including chores in the flat or cooking.

I will update you as to how I manage.

Index

To read any of the posts in this blog please click on the relevant link to the post  below. Thank you

A life worth living? Apparently not!

 I have a cunning plan. . .

My cunning plan works

We are not your path to fame and glory. . .

I've hit a brick wall 

A Life Worth Living? Apparently Not!

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.