Tag: NHS

Movement – or lack thereof

They don’t teach you about this in carer school – how best to manage an acute, chronic condition on a weekend when frontline health services are either unavailable or greatly reduced?

If you’re eating, you may wish to look away now.

MW has an issue with her bowel, i.e. it doesn’t function properly at all.  Her MS-affected nervous system causes her intestine and bowel not to move correctly and the medication she takes to counteract pain – opioids, etc – list constipation as a side effect.  It’s touching cloth…sorry, touch and go as to whether I enrol her into Constipates Anonymous, where she can say “Hello, my name is [redacted] and it’s been 14 days since my last significant stool”.

I’m not taking this lightly.  I’m trying to make light of a situation that, frankly, is making me fucking seethe.

You see, she takes a lot of medication to deal with her bowel problem.  Oral softeners and laxatives by the shovelful.  None of which seem to have made any difference at all.  In the last few days, community nurses have given an enema and a suppository.  No effect.  Last Friday, the nurse team asked for a stronger enema to be prescribed.  I had to go out, leaving MW in the capable hands of the carers, expecting to return home to a card from the chemist asking me to pick up the item the following morning.  Got home.  No card.  Hmmm…..fair enough.  I’ll just go to the chemist in the morning and see if they’ve had a prescription faxed through.

Later that night, I get a message from the carers telling me that the GP rang while I was out and spoke to MW.  Bear in mind that this is MW’s named GP and that MW has little understanding of conversations or memory.  And that this GP – who has access to her full medical history – should be fully aware of this.  I ask MW about the call and, sure enough, I was met with a blank look.  From what the carers know, a prescription was sent to a chemist which I should pick up.  So I did.  Yet another oral laxative.

Long story short – I’m sitting here on a Sunday night, waiting for an ambulance to take MW to hospital on the recommendation of an out of hours GP.  MW still hasn’t shit.  It’s making her extremely sleepy – more so than usual.  I rang 111 (non-emergency out-of-hours NHS line) at 3pm.  I’ve been triaged twice, explained the situation to a nurse for half an hour, gone through the whole bloody thing again for a further half hour to a doctor and told that MW should be taken to hospital for an X-ray to see if there’s a blockage.  An ambulance has been requested.  MW has been waiting in her wheelchair for five hours.  Not as comfortable as she’d be in her recliner chair or bed.  I’m expecting a third call apologising for the delay and telling me that the ambulance service is under extreme pressure due to emergency calls.  Fair enough.  I get that they’re underfunded and overstretched.  But my main concern is that even if the ambulance arrives right this second, MW is going to have to wait for another 2-3 hours in A&E before being seen by a doctor.  There’s little prospect of an X-ray being carried out tonight.  The GP already told me that there’s no bed available for her to be admitted.  So, in effect, she’s going to go into a 15th day of no bowel movement.

The thing about this is that it’s not trivial.  Any exacerbation of one symptom has a knock-on effect on everything else MS-related.  Particularly fatigue.  That’s the beauty of a condition that affects the entire nervous system.  Something seemingly innocuous can have a severe knock-on effect on everything else MS-related, e.g. fatigue, breathing, regurgitation of food/liquid and subsequent choking/aspiration.

There’s no guidance for carers on what to do in these situations.  We make it up as we go along and hope to fuck that we don’t make a mess of things.  It’s a matter of trust.  And I’m running low on healthcare professionals that I *can* trust.

Something is rotten in the state of Denmark.

Something is rotten in the state of Denmark.  And by Denmark, I mean the NHS.

I don’t like to chuck brickbats at the NHS without cause.  I am eternally grateful for every second of help they’ve given to me and those close to me.  This doesn’t mean that it is beyond criticism where it’s warranted.  Let me illustrate what I mean by giving you two examples that I’ve encountered.

Firstly, MW is home now.  She was discharged two weeks ago with a small supply of her medication.  I assumed that her regular Nomad pack would resume delivery (a Nomad pack is a sealed, one week supply of meds).  No-one had told me otherwise.  In fact, no-one told me anything regarding the administration of discharge.  MW was given no paperwork so I thought everything would be taken care of automatically.   By day 7 (Thursday) of being back home, there was no delivery of Nomad pack or any word about delivery starting again.  The supply of meds MW was given by the hospital pharmacy wasn’t going to last forever.  First thing on the Friday, I spoke to the chemist.  After asking me whether there was any change in MW’s medication (for the purposes of the Nomad pack, there isn’t), they told me that they couldn’t release any medication without authorisation first from either the hospital or the GP.  Apparently, MW ought to have been given a letter of discharge from the hospital.  Well, she wasn’t.  So, I rang the hospital ward where MW was admitted.  The nursing sister told me that she’d contact the consultant’s team and get them to either fax the chemist or GP with discharge information.  But she couldn’t tell me when this might happen.  That was a bit wishy-washy for me so I rang the GP surgery, explained the situation, told them the MW was running low on meds, and asked them to ensure that the Nomad pack delivery would start again.  “Okay, it’s done now”  Great.  By now, it was Friday afternoon before a bank holiday.  I knew nothing would happen until Tuesday at the earliest.  I could just about eke out the remaining meds for a few more days (by missing one or two doses and hoping the pain wouldn’t be too bad).

The following Tuesday, I tried the chemist again, in person, hoping to be given a Nomad pack for a week.  I was told the same thing about authorisation.  The assistant offered to ring the hospital ward to find out whether any paperwork was forthcoming.  She was told that the hospital had a three week backlog in clearing paperwork regarding discharges.  I was astounded. This wasn’t good enough.  The assistant rang the GP on my behalf and was told that the best thing they could offer was a telephone consultation with a GP.  I should ring the surgery between 0845 and 0930 on the Wednesday morning.  I was pretty angry by this stage but if the chemist was adamant that they weren’t going to release any medication, I was stuck with it.

Wednesday morning, I duly rang the GP.  A fax had now arrived from the hospital giving details of treatment given and medication required (no change in Nomad pack).  The GP would fax to the chemist this very morning.  Relief!

By 3.30pm today (Thursday), still no Nomad pack.  I went to GP, they confirmed fax had gone to chemist and gave me the original prescriptions to take.  Back to the chemist.  The chemist confirmed they’d received the fax but hadn’t made up the pack yet.  After half an hour of hard glaring, and some rushing about on the part of the chemists, I now have a shiny, plastic Nomad pack in my hand.

MW had run out of anti-depressants and I was giving her doses from my prescription, and I was having to give her one less dose of Tramadol every day to ensure she didn’t completely run out of meds.  MW has a chronic, incurable condition.  This seems a lot of to-ing and fro-ing for something that seems to be very simple to accomplish.  It’s more than just a communication breakdown.  It’s a system that appears to be broken.

The second example concerns my mother.  She’s coming here on Saturday because they found a lump in her latest mammogram.  She needs to have a lumpectomy and has elected to have the procedure done at the hospital near me because I can’t get over to where she lives while caring for MW.  We are all the family each other has.  Her local hospital (FGH) was to send a letter of referral and a copy of all her scans to the hospital here (SRH).  Mum has now received an appointment from SRH for the same scans that she underwent at FGH.  She rang SRH to clarify and was told that FGH could e-mail her scans over.  On informing FGH of this, she was told that the consultant at SRH may want to see scans done by the team at SRH.  So, she has the appointment but doesn’t know what to expect when she gets there – a chat or 4 hours of scans.  Again, this seems more than just a communication breakdown.  It’s a system that doesn’t appear to work properly.

As I wrote, I don’t like kicking the NHS for no apparent reason.  And it’s not enough just to be quiet.  I know that opposers of state health provision will leap to their favourite conclusion.  To hint that there is any whiff of inefficiency in the NHS is to give ammunition to those who clamour for its privatisation.  Let me be absolutely clear where I stand.  Privatising the NHS is stupidity beyond description.  Only the gullible and the greedy reiterate ad-nauseam that the only way to guarantee efficiency is by using private business.  It is a ludicrous notion.

But I can’t ignore what’s happened just because the threat of losing the NHS is real.  There has to be a way of being able to criticise the systems without jeopardising the service.  To be able to urge improvement without giving in to dogma.  To borrow another line from Hamlet, “There is nothing either good or bad, but thinking makes it so.”  We should concentrate on keeping the good and find ways to make it better.  Not allowing the bad to prevail with a view to selling it off and leaving worse behind.