Do I contact PALs?

[WeldonWenger]

Dad has Parkinson’s and is in hospital with a broken foot.
His bone is mending (although he is immobile) but he is deteriorating in his general health because of what I can only describe as a lack of care linked to his Parkinson’s .
Staff are aware that Parkinson’s medication is time critical and when he does not get his tablets on time he becomes confused however despite requests and staffs saying that they will set alarms, his medication continues to be late and they seem to be treating him as if he is just an elderly man rather than someone who is losing cognitive function because the tablet has been late.
I have requested a leaflet from the Parkinsins Society to pass on to the ward which states medication is time critical to try and identify this with different members of staff.
I’m not able to visit every day. Mum is going in every day but she feels that if she complains the staff will not be kind to my dad.
In addition if a Parkinson’s patient is constipated, they become confused. Again, staff have not been given him prescribed Movicol.
Yesterday, my mum requested a bed pan for him and the HCP said it is okay, he is wearing an incontinence pad so he can just defecate on that!

We are horrified at this situation.
My mum is worried about complaining but I think that I need to speak to someone about this level of care.
My mom is in 80s but considering taking my immobile dad home and with the help of the hospital bed and hoist trying to care for him herself rather than leave him to be neglected.
Just to add we can’t get the Parkinson’s nurse to help as since his diagnosis for Parkinson’s he has not been seen by the Parkinson’s nurse- he has had one telephone consultation to change his medication but we have been told he is lucky to have had that as there is one nurse for 700 plus patients.

Does anyone have any suggestions about how I can approach this please - is PALs the option?

Absolutely speak to PALS in person if you can and make yourself as bugger nuisance as you can. Not giving patients medication at the right time is surely a very basic failure?! Sorry for your dad

Speak to PALS, you're right it sounds awful 😔

I’m a nurse and I’m so sorry, this sounds so upsetting. I often wouldn’t be able to get round to giving my patients’ 9am medication until gone 11am. It’s one of the many many many reasons I left clinical nursing. I’d hope (for want of a better word) that the nurses are despairing of providing such poor care. The service is close to collapse

Thank you for your replies - my post has linked to other threads about PALs which I’m reading now and it seems like nothing will change if I do speak to them…
I will try as I can’t not but it is so upsetting and frustrating. So sad

Please contact PALS.

My father in his late 80s had a fall and after 4 weeks in hospital was incontinent. He had great care in ICU but the nurses on the ward for the elderly were awful. No attempt to help him to the bathroom and hours to change him so he ended up discharged incontinent with bedsores.

Please don't let them just discharge your father as that is what they will do if your mother says she can cope. The OT assessment said my father needed no help and was fit - the district nurses were appalled and came daily to dress bedsores and arranged the medical equipment he needed to get out of bed.

After 6 months of incontinence underwear (from just 2 weeks on the elderly ward ) my father is now fully continent again but the family has not recovered as even with electrical equipment to lift etc none of us was fit enough to care for him.

I wish I had pushed for him to have gone into a nursing home for a week or so (funded by NHS) as that would have been cheaper for the NHS once he was out of ICU and he would have had better care so that when he was discharged home he wasn't in such a poor state - that may perhaps be an option for you if they see him as a bed blocker and better for your mum ?

@WeldonWenger there should be a Parkinsons Nurse Specialist in the trust, please contact them, your mum or dad will hopefully know their name.
The ward staff should too.

Here's how we dealt with this when my late OH with PD was in hospital.

One of us ... I and my 3 adult DDs .... was with him from morning to night. It was the only way he got his meds, got fed, got a bed pan/bottle. If we were not there then none of it happened. We had to badger the the staff all the time. I am sure they hated us as they were so busy but my priority was my OH.

I put a notice over his bed ... Please give Tablets in Yoghurt ... as his swallowing was poor ... but they only did it if I was there.

The time critical aspect of PD drugs goes out of the window in hospital unless you are there to remind them. And it is vital.

The sheer frustration of seeing the hard-won routines that were keeping him stable turned on their heads whilst he was on the ward was so frustrating.

I also enlisted the help of the excellent and very forceful, PD nurse who came on the ward each day and read the riot act on his behalf.

Is there a PD nurse at the hospital? ... seek them out and get them onside. They can be your ally. And do not hesitate to contact PALS ... not what any of us want to do whilst coping with a sick loved one but what choice do you have?

I am sorry you find yourself in this situation ... it brings back awful memories for me.

@Reginald123 @Mischance I am sorry you have been through similar but thank you for your advice - I will act on it - I need to do this .

When I was still on the wards, I would put an alarm on my phone for PD medications- you need to be aware of them outwith your normal medication round.
Has your dad been prescribed a regular laxitive or is it still described PRN? It sounds like it needs to be prescribed regularly if they aren’t giving it. The pad thing is really bad, one of my biggest hot bottons in nursing. It’s bad for his skin, bad for his dignity, and isn’t going to help his constipation at all.

PALS is a longer term thing. For something to be done now, insist on a meeting with the charge nurse and consultant, and then clinical nurse manager if nothing changes. This really is unacceptable, write down all your concerns, taking a supportive person, and go in there feeling calm but righteously angry about it.

Would your dad be able to manage the Parkinson's meds himself, or could family do it (on a rota)?

Normally hospitals don't allow self management of meds, but exceptions can be made in cases like this where they aren't able to meet critical timings. See recommendation 1.3.4: www.nice.org.uk/guidance/ng71/chapter/Recommendations

@BriceNobeslovesMurielHeslop thank you for sharing the guidance. sadly, currently wouldn’t be able to manage himself. There is just my mum and me visiting and the first medication is at 7.30am so while we can check on the later doses it is tricky.