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...