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.

What about asking if enema can be kept in the house in case needed in future?
Also has he tried increasing docusate to 5 daily, normally a gentle effect, 5 daily not excessive, as a preventative.

Oh my word @carertryingtokeepmycool I am raging for you! As he is under DN care ask them to give you their team lead or charge nurses details and speak to her (him) about this. You’re absolutely right that he needs a bowel regime and the stupid GP is a knob. The DNs should be able to arrange and implement this. I’m sorry they’ve not been helpful so far. But this is absolutely in their remit.

Generally patients are only deducted for being physically aggressive, or if the relationship is seen to have broken down irretrievably. However - do you want to stay with the surgery? It doesn’t sound like your dad’s care is being managed that well, and you might find you like a different surgery better.

Apart from this one doctor, we quite like the surgery and it’s also linked to the pharmacy which dispenses my dad’s drugs. I suppose one option is to ask for a second opinion from another doctor in the surgery. There is one I’ve dealt with in the past who seems like she really cares.

Oh, the doctor also queried why I’d not ordered Laxido on my dad’s last 3 prescriptions. I explained it was because we had a stockpile at my dad’s house and wanted to use them all before ordering more. He immediately jumped on ‘well, he’s obviously not taking it every day if you have a stockpile’. No - he’s not been using it because he’s been in hospital on and off for three separate months due to bowel impaction - that’s why we have a ‘stockpile’ at home!

I’m not expecting a GP to be well versed in all diseases but its commonly known that Parkinson’s and constipation tend to go hand in hand - even the PD forums say that without a bowel plan, water, fibre and laxatives are not going to be as effective. This doctor basically said ‘there’s no such thing as a bowel regimen’.

All I want is for someone to listen to what the patient (and his family) are saying.

Are the Parkinson’s meds absolutely necessary?
Are they causing the constipation?

In your shoes I'd do 2 things next:

1. ask for him to be moved to the list of another gp - not a second opinion, just have a different named gp
2. next time he's admitted and the doctors at the hospital express their shock and what should have happened ask (insist) they put it in writing - either a letter to you which you can take to the gp or ask them to email the gp surgery immediately OR spell it out in his discharge notes

Should help - good luck!

Yes, the Parkinson’s meds are necessary. Without them he has a bad tremor and frequent freezing episodes which dramatically affect his quality of life.

Parkinson’s itself can cause constipation as it can impact the gut and how food travels through the digestive system. It can mean stool sits in the colon longer and can effectively turn to the poo equivalent of ‘cement’. Horrible, horrible illness.

But that's a huge part of an mp remit, to advocate for individuals. We used to have a protocol for responding to MP complaints.

It's awful, knowing what's needed and also not having anyone listen to you. I think it's the biggest factor in my carer burnout

Yes, I was gutted to get the response too. He just referred my letter to Stephen Kinnock who is minister of State for Care and I got what felt like a ‘cut and paste’ response about all the great things Labour are doing (according to them).

I think you’re absolutely right - carer burnout is made 100% worse by dealing with agencies who simply pass you from one person to another, making it maddeningly frustrating to get a solution to a simple problem.

hes not on codeine is he, it bungs up old people really badly. awful stuff. but cheap to prescribe….

A pp mentioned the parkinsons nurse. Is there a specialist nurse in the neuro dept at the hospital? Write to PALS copying in your dad's consultant explaining what you have said here.
I was a clinical nurse specialist in a different field. GPs are not specialists. I frequently liaised directly with community nurses to put care plans in place, just informing the gp once everything was organised. Tbh, gps often gave incorrect advice/ treatment and I and my team had to be both vigilant and diplomatic.

That’s a good shout about the Parkinson’s nurse. She does check in with my dad from time to time and might be able to write to the GP.

My dad started to get ‘bunged up’ again the day before yesterday but thankfully the district nurse has been round and given him a suppository. He’s only under their care at the moment because he’s recovering from pneumonia and it caused complications with his other condition of heart failure. Had he not been under their watch, we would probably have been on the merry-go-round again.

But yes, I’ll contact the Parkinson’s nurse. Thanks for that tip.

He can use a suppository daily especially just a glycerol one, I’m not sure if he can do this himself. They are very gentle. You can also buy dulcolax suppositories from the pharmacy if the glycerol don’t help, these are stronger and work well. You can also buy enemas for when things don’t move at all, there are miralax enemas which are gentler or the proper ones which you can get on Amazon!
the GP sounds like he’s not clued up on bowels! So frustrating.

If he has the physical skills still he can put the suppository in himself or if he doesn’t mind you can do it, it only takes a second. Bless him.

I would start diarising everything daily. How much water, what foods (not overly high in fibre) , routines for bowel movements . You
want to after this episode make the body as routine as possible with trial and error. It might be the same foods once it works and monitoring stools for the slightest change
in them. This is the only way I can see. Also once you have this diary, you will notice patterns and can fine tune . The diary also acts as a preventative measure and even a tool for advocating . Any exercise and movement diarised too as this impacts bowel movements too. I think you need to nail down the perfect routine for the bowels and this is the way forward. Just my thoughts

Tell GP practice that you will be filing a formal complaint against them. Maybe that way your poor dad’s issues will be taken more seriously.

This feels outside the remit of the GP, to be honest. His Parkinsons clinic need to be managing this as it's a symptom of this condition (or a side effect of the meds they've prescribed to treat the condition). I think the Parkinsons clinic team need to get him in for an urgent review and a referral on to gastro (or a med review). I'd also have a chat with his pharmacist as constipation is a common side effect and symptom, and they may have advice about med sequencing to reduce the constipating effects.

This. Normal rules around constipation do not apply in this case. This is the effect of Parkinsons on gut motility and it is predictable and manageable if recognised early. Waiting for impaction, complete shut down and the inevitable bladder obstruction and uti is negligent and cruel.

Thank you for this comment - sums it up perfectly!!

In a somewhat weird update, ever since my dad’s last A&E trip, he was sent home (under the care of the district nurses) with a catheter. No one seemed in a particular hurry to remove it despite the fact his bowel was now working normally again.

Two weeks passed and the district nurses seemed to assume this was now a permanent thing but my dad was very resistant to the idea (as was I). It’s massive overkill considering all he needs is someone to manage his bowel regime.

Long story short, the catheter got blocked, dad rang the nurses and they had no one available to come out. He sat there for several hours, bursting to have a wee and didn’t know what to do. It happened on the one morning I had a critical work meeting and had asked him not to ring me unless it was an emergency. He didn’t consider this an emergency for some reason…and as he got more desperate for a wee, he googled how to do it and then basically deflated the balloon and removed his own catheter!

I was gutted he hadn’t rung me but he said he really didn’t want to bother me on such a big day (it was a work merger so quite a big deal). Anyway, he ended up with a UTI but is now on antibiotics and is mostly ok.

So much drama and all because no one will help him manage his bowel.

If your Dad can remove a catheter, would he really not have a go at administering an enema? Honestly they are very easy. I'm not saying he should have to do it himself, but in the short term, it seems like the only way hes going to get one.