I really wish someone would listen to me!

[carertryingtokeepmycool]

So, it’s another day and yet another mostly unnecessary hospital admission for my lovely 80 year old dad. I seem to be banging my head against a wall, trying to get the healthcare professionals to listen to me.

My dad is quite frail with multiple chronic health conditions including Parkinson’s. The Parkinson’s and some other drugs he takes cause him to get severely constipated. He takes daily laxatives but eventually it gets so bad, his urine stops and then he has to go to A&E for both an enema and a catheter. He’s been admitted 4 times (the 4th time tonight) in the last 12 months for the same problem.

Every time it starts, I get straight on to the GP and I ask if they will prescribe an enema and refer him to the district nurses for at home treatment. Every single time the GP says that no, he needs to wait, drink more water, take more laxatives and ‘they’ll see’.

This time he’s been under the care of the district nurses for something else so most days this week I’ve been asking ‘please can you do something - this will only end up with him in hospital’ but sadly, no one has listened and today, as predicted (day 7 of no bowel movement), he stopped being able to wee and so off we went again to hospital. Even the paramedics were aghast and asked why he’d not been treated at home and I said I didn’t know - I just go round in loops between the GP, the nurses, the bowel team and the frailty team. It’s so frustrating. I’ve put it in writing to the GP, asking for a bowel regimen to be put in place but nothing was done. Meanwhile my poor dad ends up being a bed blocker.

I know everyone is trying their best and the whole system is under pressure but this bad communication just seems to be a huge waste of NHS time (and a hospital bed). Is there anything else I can do? I’m always polite in all my dealings with everyone but I think I’ve had enough today. It’s just so tiring to keep going round and round with the same problem.

Oh no i am so sorry that sounds hellish.

Which laxatives is he on, maybe something like movicol or laxido will help him go better ? He isn't bed blocking he is sick ask the ward drs for a better bowel regime, i hope things improve for him and you

I used to work in this field and this does happen with Parkinson's patients.

If the GP isn't managing it, is there a Parkinson's nurse who can advise? Or, since it's a recurring problem, could your dad's consultant write to his GP with a management plan to put in place for next time?

Could you not just buy an enema, and administer it at home. He might be able to give himself the enema (I did once, before a procedure). You (or he) might not want to it yourself, but could you have a carer do it?

Yes, he’s on daily laxido as well as another drug (forgotten its name). He tends to be ok for about 8-10 weeks and then he’ll just suddenly not be able to go. Usually on day 2, I start waving the flag, ring the GP and I always get a message back from the receptionist with the same advice - drink lots, eat some prunes, take more laxido. Of course by that point, his guts have turned to cement. I wrote to the GP and asked for a bowel regimen and so far nothing has been done.

Can you change GP?? My parents changed recently due the poor treatment my dad was receiving, it has made a huge difference at the new surgery x

This sounds very distressing and inappropriate for your dad to have no plan in place for these issues- sorry you are having to go through these battles for appropriate care.

I would contact his consultant or if he has a parkinsons specialist nurse contact them as they need to liase with the Gp to prescribe a bowel regime that prevents this happening, or have a plan in place for when it does to prevent admission.

It is also worth asking the GP if your dad could be referred to the community matron in your area. The criteria is different in different areas so not sure if he is eligible but their aim is to oversee patients with chronic health conditions and frailty to optimise them at home and prevent unnecessary admissions. They can also act as a point of contact between Gp, hospital teams, family etc. They are amazing in my experience but it can be difficult to get on to their caseload. It's definitely worth mentioning though if he doesn't have a designated parkinsons specialist nurse.

Thanks everyone. By the time we got to hospital tonight he was quite severely in distress. His heart rate was high, he was cold and sweaty but thankfully he was seen very quickly and immediately catheterised. A litre
came out almost immediately - my poor dad!
The A&E doctor was annoyed that it had been allowed to get this bad. She’s suggested I get right back on to the GP and insist a regimen is put in place (I’ll do this…again!). The good news is, because he’s under the care of the district nurses already for another issue, they’ve allowed him to go home with the catheter. He was so much brighter when I finally got him into the car at 1am and got him home.

Thank you for all your advice - I’m going to look into all this some more.

You can buy phosphate enemas from the chemist if your GP does not get this sorted out. You should not have to do this yourself but they are easy to administer if your DF can get over the embarrassment of you doing this for him. Insist on a plan. There is a bowel and bladder team connected to GP’s who should be able to help.
I do sympathise with you and your DF. I hope he is home soon.

A written complaint often does more than a verbal complaint.

@carertryingtokeepmycool just offering you this for information

You have to put everything in writing. An email counts. Copy to GP, Practice manager and whoever is in charge of the community nursing team. You can usually google this. They are not linked to the GP service.
Phone calls in the nhs are no use at all.
The mantra we were all taught is that if it isn't written down it didn't happen.

Complain. Sadly, as soon as there's a written complaint in place (has to be from your dad because of data protection) theyll do something. GP friend advised me people get the care they demand. Do it in writing and ask for a written response.

A glass of prune juice every morning and the GP can prescribe fybrogel to add fibre to his diet.

Sorry for your dad, it’s unfair he’s constantly put in the position where it gets so bad. I suffer with slow motility and take sodium picosulfate daily (laxido used to fail for me and compound the issue - sounds like what’s happening for your dad) and go like clockwork (though the dosing is a fine art!). Might be worth a try in the interim.

The Parkinson’s nurse would be my focus but I agree also about the community matron.

He needs to take more laxatives each day.

My dad is in exactly the same position with Parkinson’s and other conditions which affect him. After a long spell in hospital where his bowels were impacted along with a UTI he finally came home. It’s been an endless cycle of constipation and Laxido. He also has a catheter now but this has produced as many problems as it has solved. We’re now battling to get help with anti biotics for another UTI and balinitis caused by the catheter (I’m never going to unsee images of this). The GP doesn’t respond unless I mention the word sepsis. We’re generally having to call 111 and wait endlessly for a response. We just get him comfortable and the cycle begins again with bowels or bladder. We also want to avoid hospital stays as this impacts badly on his mobility and then makes it difficult to manage his care at home when he struggles to weight bear. No one does anything to keep mobility going unless you insist on support with community teams. It’s so frustrating to see him struggle and have to constantly chase professionals to get him help. He’s supposed to be on a “virtual ward” to prevent hospital admission but it doesn’t seem to be working as there is no regular contact.

He's not a bed blocker. Please dont use this term, it dehumanises people

OP, how much Laxido is he on daily?..he can have up to 8 sachets a day. Also second buying enemas to give him, yourself, if he'll allow that. This is being hideously badly managed...your poor dad, and poor you.
Definitely community matron and/ or Parkinson's nurse.
How bloody frustrating! Do complain in writing, and find your voice to start demanding better care. Best of luck.

I'd put a complaint in to your local ICB and if no success get your local councillor or local MP to forward said complaint back to them. It is the most likely option to work and you've tried multiple times to get the GP to take it seriously.

To answer some questions...
On a normal day he takes 2 x docusate plus 2 x sachets of laxido. This usually keeps him regular but then suddenly one morning he’ll not be able to go so he immediately goes to 4 x laxido, then 6, then 8.

We know it’s a pattern so as soon as this starts, I’m straight on to the GP. There’s permission on his file for them to talk to me. As he also has the district nurses caring for him this time over a separate health issue, I spoke to them 3 or 4 times and asked them to read his notes and help us. I explained this isn’t ordinary constipation, it’s part of a chronic condition that repeatedly flares up and always ends up in a trip to A&E.

On this occasion, the GP prescribed an enema on day 7 (but only after I kept nagging them). By that point dad’s urine was starting to slow down so he refused the enema as he knew it was too late and that he’d need hospital. If he’d taken the enema, he’d have been leaking everywhere (it’s awful!) and still have to go to hosp anyway where he knew he’d be given an enema in a controlled environment.

In terms of me administering the enema - dad and I agreed early on that neither of us wanted to cross that line of dignity. I’m certainly happy to buy some but administering them - we need help for that.

And yes, ‘bed blocking’ is an awful term but it is one of the biggest issues in the NHS I think - people like my dad who really do want to live as independently as possible but to do so, need support in the community. My poor dad ends up in a hospital bed when he doesn’t need to be. I agree it can sound dehumanising but it’s an issue that’s not being tackled.

Ok, so my plan of action today is to write again to the GP and send copies also to the bowel and bladder team and also see if there’s a community matron.

Also, last year I did write to the MP who basically said he couldn’t get involved in individual cases and passed it on to the Health Secretary. I then just got a generic letter back telling me how the government was meeting all its NHS targets etc.

I feel so sorry for people who don’t have anyone to advocate for them!

Maybe try your PALS team at your local ICB, as this is one of the things they're meant to deal with. If no luck, your local councillor might be worth a try as if they put your case forward to the ICB complaints department they will have a timeframe for dealing with it. I think you could complain now, while it's not happening, to get a plan agreed and ready to use for when it next happens.

ICBs are the ones who commission both hospital and GP care, as well as community care from district nurses, so they are well placed to deal with it.

Total nightmare though and you shouldn't be having to do that of course.

Coming back to this thread after a very disappointing chat with my dad’s GP. I wrote to the surgery a week ago and asked for some kind of plan to be put in place. They arranged for the doctor to ring me and I don’t know if he was offended at my letter (it mentioned him but it wasn’t a complaint, just a polite request that we manage this at home) but from the start of the conversation the doctor sounded irritated.

The call was on speakerphone and he was typing loudly as we spoke so it was echoey and hard to have a good conversation. It immediately felt quite distant. I explained the issue and without even taking a breath he told me my dad needed to drink more water, increase fibre and do his best to be mobile. I explained we were doing all of that plus but this was a chronic condition and needed proactive management.

He said ‘well next time it happens you need to book an appointment and bring him in’. I said, ‘yes, I do that and the doctor who came out told him he needed to drink more water too’. I then explained I was trying to avoid these preventable trips to A&E and could they prescribe suppositories or an enema when things got bad. The response was, ‘he needs to drink more and up his fibre plus take laxido. We don’t want to get over-dependent on drugs’.

I again explained this is a chronic condition, repeated impaction in his bowel and something linked to Parkinson’s. He then told me there was no such as a ‘bowel regimen’ and yeah, you get it, ‘drink more water’.

My poor dad is still catheterised from his last A&E visit and I asked if the GP could instruct the district nurses to now take it out. GP actually said ‘well if we remove it, it’ll just happen again’. I said ‘my dad doesn’t want or need a permanent catheter’. Was he really suggesting my dad have a permanent catheter?

I just looked at my dad’s NHS app (I manage it for him) and the doctor’s notes are that my dad must increase fibre and water and added at the end , ‘daughter happy with plan’.

I’m so discouraged. Why is it so hard to get someone to listen to us?

I’m tempted to put in a complaint to the ICB but then I’m concerned the GP will remove him from the surgery. Many years ago my late mum made a perfectly reasonable complaint about a GP and they removed her from the surgery. Maybe they’re not allowed to do that any more?!

I ended the call with the GP by saying, ‘we’re reasonable people and we understand the pressures you’re under, we’re just trying to avoid unnecessary trips to A&E’. Doctor didn’t say anything, just continued typing.

Does googling your location and district nurse referral bring up any pages like this? It may be possible to self refer and get him on the district nurse radar now when there is no emergency.
https://elht.nhs.uk/services/district-nurses

My dad was also in a virtual ward / Intensive Home Support Service after a hospital admission. It was for heart failure so maybe different but when he was well there was no visits or care but if his legs swelled up or he felt unwell i could call up and the daily visits would start to check his vitals and refer on if needed.
https://elht.nhs.uk/services/intensive-home-support-service

My dad never saw his GP to the point where the GP had to call and ask me ‘what do you think happened?’ when he needed to write a cause of death on dad’s death certificate!