Cockroach Cafe - Autumn

@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.

@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.

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

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.

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!

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.

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?

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…

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.

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.

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.

@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.

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.

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.

@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.

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

@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.

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.

@countrygirl99 Yes, the waste of NHS resources is the other part of why this silo thinking doesn't work. What DM really needs is one HCP (or small team of HCP) who really understand dementia and can co-ordinate specialists as needed but with an overarching view of the big picture. I thought the dementia nurse she saw at first was going to be that person but actually where DM is the dementia care team only seem to deal with diagnosis then refer back to the GP. The GP just refers her to more and more clinics to deal with the individual physical issues, most of which don't make any difference because the real issue is in her brain

Thanks @bigdogpaws, that’s more or less what we’re thinking & we do have a place in mind.

@EmpressaurusKitty Having seen how DM's dementia has progressed, if I were in your position I would be looking at suitable residential care as soon as you can. Better to sort it out now, when he can manage with visiting carers whilst you choose the right place for him, than have to sort it out in a rush with less choice when a crisis inevitably happens.

Mum had a cardiology referral after a few falls. The consultant wanted to do a 7 day heart monitor and a scan I explained she wouldn't cope with the monitor due to her Alzheimer's and they'd need to arrange the scan appointment via me. Consultant insisted the monitor went ahead so I did the 2 hour round trip to take her to the fitting and another 2 hour round trip to take her home. By the time we got home she'd forgotten where we'd been and by the time I got home she'd taken it off. When I went up the following week to collect it she'd forgotten it existed and got really upset and angry while I searched the house to find which random drawer it had been put in. After that they kept phoning mum instead of me to make the scan appointment, which she instantly forgot, and I only found out when I found the letter saying she'd been taken off the list for missing 3 appointments. Such a waste of scarce resources because of silo thinking.

That’s what my siblings & I are trying to decide.

Dad, who lives over 3 hours away from all of us, scored very low on a cognitive test a fortnight ago & almost definitely has dementia. He’s started to ask where Mum’s got to - she died a few years ago.

The GP has sorted out a twice daily carer from tomorrow to give him his tablets & meals, which is great, and we visit as much as we can, but it’s whether we see how this goes or find him a place in a home now. Somewhere central that we can all visit.

Connected to the eye test issue- I've found it very frustrating that DM sees so many HCP and attends so many clinics for her various physical health issues but each seems to be treated as a stand alone issue. From speaking to the dementia nurse who saw DM at the start of her diagnosis I know that they are all interlinked with the dementia (either as something that contributed to developing dementia, as a symptom of dementia or exacerbated by dementia). But when it comes to treatment everything seems to be dealt with separately. So DM has hearing aids that she doesn't use because she won't put them in or out without me there, physio exercises that she doesn't do regularly because she struggles to process how (even immediately after being shown and helped) and very simple tools/aids to help with mobility and vision that she doesn't use because she can't process how. I know it doesn't help that she's still very good at pretending and telling each HCP what she thinks they want to hear, but I've found that even when I try to explain that she won't be able to do/use things people don't realise exactly how difficult even something very simple is to her.

Re eye tests, my DF kept doing very badly on the peripheral vision test where you press a button when you see a wee light. The optician kept calling him back to do it again - which was completely pointless as his dementia meant he had no idea what he was doing and either didn’t click the thing or just clicked it at random. I suspect part of the issue was that DF had no insight into his dementia and DM was deep in denial! His last eye test was done at home and I think at that point the optician realised the problem - no doubt helped by the whiteboard in front of DF’s chair with info such as “This is home. You are at home” written on it.