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!