Cockroach Cafe - Autumn

Once upon a time, the Care of the Elderly physicians were excellent for taking the overview.

But with the expanding elderly population, there just aren't enough to go round! Plus there's the culture of actively treating everyone by a specialist, by which I mean that an older person with (eg) heart failure is probably more likely to be referred to a cardiologist than a CoE physician.

That in turn means that specialist resources are spread even more thinly.

Meanwhile, less qualified HCPs are often the first point of call for many of these services. They may be highly trained in a narrow field but have never received teaching in the broad overview in the way that all doctors do as part of general training.

@bigdogpawsI couldn’t agree more re the silo working and no one having overall control. One of the issues people point to with the issues of the crumbling NHS is that we now have a larger elderly population as if it’s the volume rather than the unique issues that group present with. It creates even more of a burden when often a significant percentage have memory issues and cognitive decline. My mother has alcoholic dementia and , has refused to stop drinking so mental health services have washed their hands of her but this never seems to be acknowledged by any GP she sees. Every time she goes to the GP whatever she says is taken at face value and there’s no professional curiosity as to why, for example, she is going to the GP almost weekly for ‘cystitis’ despite the urine samples showing no infection although she’s always prescribed antibiotics which we’re not even sure she takes. Often the carers can’t find them as she hides them/bins them. Each time she sees a GP she says ‘it just started yesterday’ but no one seems to check her notes. We spoke at length with a lovely GP at her practice who was glad we had brought it to their attention and would a note on a records after one particularly bad week where she ended up with 3 lots of antibiotics in a week due to going to A&E and seeing 2 different GPs with cystitis that ‘only started yesterday’. Lovely GP even sent someone out to remove the additional antibiotics. A week later back at the GP, different GP prescribes another 7 day course of antibiotics! We did phone and strong words were had. New GP totally surprised this situation had been going on for months and only one of the urine tests taken 6 months previously had even shown an infection. We pointed out she had a severe uterine prolapse hanging down between her legs and with all the alcohol she drinks obviously it was going to cause discomfort in that area but it wasn’t necessarily cystitis. GP helpfully then says ‘ I think she needs a referral to gynaecology’. Yes of course she does and one was made 2 weeks ago (did you not read her notes!!)

If there was genuinely one GP in overall control of the situation it would save the NHS so much money in time and unnecessary medications. This whole situation of having a ‘named GP’ is totally meaningless. My father is no help as she is an aggressive bully and will just go along with what she says to keep the peace.

Why isn't a dementia diagnosis highlighted in a particular colour on notes?
A big pink box around their name or something?

@MittensTheKittens you'd think that would be an obvious thing to do. But I can think of occasions where even things obviously in the notes were ignored. My dad was mid 90s and extremely frail, in and out of hospital during COVID with various infections. His notes had a big note at the front saying wife has dementia, comfort messages only all information to be discussed with eldest son or daughter. Guess who they phoned about dad being discharged. Guess who got totally confused about when dad was going to the care home, phoned the care home a few minutes after the call from the hospital and was convinced he'd died and no-one would tell her the truth because he wasn't at the care home. Guess who got the call from mum in floods of tears and spent the next couple of hours calling with no response from the ward trying to find out what the hell was happening and then had to do a 2 hour round trip to reassure mum. All while working full time.

I think the whole system around medical care for elderly people with dementia just doesn't work. As well as the lack of 'big picture' consideration of their medical needs and complications with actual treatment etc for those needs there seems to be very little consideration for how much more difficult and time consuming it is to help someone with dementia get to all these appointments etc.
My DM now has at any time at least 6 or 7 physical ailments/conditions being treated. All required regular monitoring, many with clinic appointments every month or so. Many of these involve several tests/checks. Plus there are smaller issues that need GP treatment. So there is usually some sort of medical appointment at least every week or 2. Mum would not manage to get to any of these on her own and takes a long time getting ready to get there etc. So that means 'someone' spending a full day doing nothing but getting her to an appointment once every 2 weeks at a minimum. Plus someone has to manage all the arrangement of appointments etc, which can take a long time especially f they clash or she needs to change one. There's rarely any choice about appointment dates, we're just told to wait for a letter/text. When Mum's needs are discussed this is just brushed off as 'needs someone to help her get to medical appointments'. The reality is actually that she needs someone to be able to drop all other commitments at least once a fortnight, at short notice and to be able to make and receive lengthy calls during working hours.

I feel all PP appointment pain. I have one side of DM hospital recommending joint replacement surgery and the other concerned about how she'll cope due to dementia. And I know they can do appointments and contact better as I have a 17 year old who moved to adult care for a chronic condition. No issue what so ever about calling me for appointments or updates for him, but DM with dementia must be responsible for herself. Its crazy.

@turkeyboots Just in case it's useful, DM signed a form with her GP to give permission for them to speak to me about her medical care and give me information etc. Because of that they have been happy to change the contact phone number on her records to mine, and hospital clinics etc have also been happy to change the contact number to mine and speak to me. It means they don't have her direct contact phone number on their system now, so they don't call her at all. This works for us, since Mum doesn't feel able to manage any calls etc and we are increasingly receiving appointments texts with links to click to confirm attendance etc which Mum wouldn't have a clue how to deal with. You may have tried this already, but just in case it's not been suggested to you and may be useful It obviously won't work if your DM also wants to be contacted directly and I suspect if I was on the record as an alternative contact she'd still be receiving calls and texts.

Small shuffle in but with potential Good News for a change! I think we've maybe found a 2nd carer after a successful meet and greet today! Trying not to count my chickens too prematurely but maybe a little chink of light in the tunnel.

I agree about the reduced role of a good CoE. Just having someone with holistic and realistic oversight would be so helpful - I hadn't realised they were so few and far between these days til.we've hit these years.

so many issues with maladministration in the NHS. I’m pretty sure any one of us this forum with our experiences could walk in tomorrow and organise it far more efficiently, certainly from the patient perspective. But I think the silo thinking stretches deep into the organisation itself, not just the patient experience. Having a hundred+ individual trusts each with their own admin, policies, purchasing teams etc rather than a single organisation is bonkers for a start.

i personally think the rise of the managerial style of tick box, KPI culture etc, has lead to the lack of any personal accountability and this situation. Not just the NHS, but it’s the biggest.

TBH, having worked for several huge multinational companies at a managerial level I think silo thinking is prevalent in large organisations whether they are public or private.

True. But I have never understood why the NHS is divided by country - different in Wales to England to Scotland etc (yes yes I know devolved powers etc but it’s just inefficient) and then also into multiple trusts. It’s madness. Could you imagine Tesco being run like that? As for the IT, well, it’s shocking.
Ah well. When we rule the world we can fix it, eh…

Some of the problem is that it's been fiddled with over the years, so you've lost the original reasons why things were set up or removed.
Then loads of austerity, where the good stuff got ditched (sure start etc).

GPs didn't want to be part of the NHS 60 years ago, so they get treated like a weird specialty.

There are other bits which get shoved in the council's direction (and then pulled back in), which means that you've got two groups trying to not spend their own budget.

Does anyone remember PCTs?

Also who in 2026 would have a police force and fire service as totally separate organisations split by county?

So much of medicine doesnt work for the people it's performed on. This whether it's for the very old or the very young or women. No consideration of pre-existing considerations.

Heaven forfend that any HCP should check to see what other medication a patient is on before prescribing.

I have lost count of the number of times I have said to a HCP 'you know I'm on warfarin?' as they prescribe something new only to find that the new medication is contraindicated. At least I can advocate for myself.

NHS IT is definitely part of the problem. I don't know how many different IT systems are in use in NHS E&W, but different GP surgeries can use different systems, the OOH service may be using another system, allied HCPs such as physics may be using yet another; and primary care can't access hospital IT, whilst the hossie staff can't access the GP systems. Absolute crazy madness. On top of that, different people will have different levels of access for different parts of the system, which is all well and good if it prevents inappropriate people from seeing clinical records. But I recall more than one occasion when I had to refuse to see patients until I'd been granted access to vital parts of patient records.

And don't get me started on medications. Ok, I see you have ---- on the IT system with which I was most familiar, warnings would flash up about potential prescribing problems. But these were, more often than not, so banal that they'd drive you mad (WARNING! - patient is already on XXX! Well yes, and I need to increase the dose but now I've got to override this warning and spend time typing my justification for doing do!) You can well imagine that in a busy clinic, you learn to switch off the warnings, either metaphorically or physically. And if course so many people are on so many different meds, they have no idea what they are, and if the computer can't tell you (eg hospital can't access GP records, etc) then you don't know.

Right, rant over, sorry to digress! Ooh, that's taken me right back to the bad old days of major workplace frustrations!

About 3 years ago there was a very professional gang going round raiding external ATMs in banks. Always picked ones they could park outside and in and out in minutes. They used cutting equipment stolen from a fire station. They never went to any police force more than once and the only police force where there wasn't a raid was the one where they'd stolen the kit so they'd covered most of the country before that connection was made. Once they'd done all the areas they stopped and, to my knowledge, they've never been caught. There's a good argument for a national police force.

That is a brilliant criminal mastermind!
Can we use their powers for good?

@Eclipsing Having records spread across multiple systems is just asking for trouble.
If you have a blood test requested by your GP, but done at the hospital, because someone has decided that GPs should centralise blood tests this month where do they go? Hospital or GP records or both?

I was very confused when my address in my hospital records was still my parents, I'd moved out 15years previously.

@MittensTheKittens Investigation results were one thing that was unified across hospital and GP systems. So it can be done! But, at least when I was still working (I took early retirement quite a while back), that only included investigations across one single healthcare Trust.

I live on the border between two counties, and patients could choose to use hospital services in either county, but we could only access the results from the trust in the county where my surgery was. Similarly I felt all at sea on the occasions where I worked in the other county (all of 3 miles from my house!) as referral systems and ancillary services were quite different there.

I dread to think how it works, or doesn't, across borders within the UK.

I worked in IT for government and in the finance/insurance sector for the best part of 40 years and that was bad enough. Behind most major systems there’s a behemoth of a database dating back to the 80s or 90s and then a million add-ons in a plethora of different technologies that have been developed to fill various needs or regulatory changes over the years, usually on out of support tech that no one uses any more and no one knows how to support.
I imagine the NHS is worse as it’s so devolved.

I spent some time in the 20teens working as a
Locum in GP and hospital services and from memory, I had to know how to use a use a total of 5 completely different medical record IT systems, plus the separate but integrated system for test results which did at least function across them all.

It's no wonder people fall through health care cracks when the IT is so disjointed. That doesn't have cracks, it has chasms.

If anyone wants a read that helps understand an elderly person's perspective I recommend When The Cranes Fly South. Am 2/3 of the way through and tissue used is high. Written from an elderly man's perspective interspersed with notes left by carers and his son. You can feel his son's anxiety and care as his dad's care needs increase and the dad's fear. Just off to open a new box of tissues.

It's set in Sweden but the theme is universal.

My husband has bought me this book but I'm too scared to read it. It feels a bit too close to home at the moment.

The old man in the book reminded me of my late dad. I don't remember crying at a book since I read Black Beauty as a child but this had me absolutely blubbing. It's sad but lovely at the same time. With the experience of caring for an elderly parent you can see both sides even though it's written entirely from the old man's perspective.

Oh fellow roaches.
My MILs op date been given. She is refusing it.
It actually would work ok for me, I could get there in time, stay at least 48 hours, arrange carers to come in longer. Another date might not work so well. But no, she says no. And also give me more time, To do what? What’s going to change? This is not a surprise, she has had at least 2 months to think about this. Longer really, but at least that long when it should have been a reality.
I totally get she’s scared, of the op, of the pain of the recovery.
But the alternative (leaving a prolapse pessary in) could be so, so much worse and painful than a planned for, scheduled operation.
Im so, so frustrated.