Discharge day

This is the day we’ve all been waiting for, hospital discharge day. Why we’ve been made to wait is confusing as my sister still hasn’t received the Rotunda and this morning Social Services are coming round to chat about mum’s care needs. All of this should have been in place before mum returned home, so we were apparently waiting for no reason. This doesn’t surprise me, still we must focus on the positives.

The last couple of days haven’t been smooth, the hospital still insist on giving mum laxatives or some alternative at around visiting time, which meant I spent 50 minutes one night helping to clean and change mum. When I said ‘she is going to get a hot water and soap wash’ the orderly said ‘we can do!’, I found that quite shocking to be honest. If that had been one of my children or mum had been at home she would have been in the bath for a proper FULL wash to make sure she was spotless. The chap who was cleaning her was quite nice and gentle, but as soon as the other orderly took over he wasn’t interested in waiting to see if mum had finished, he just wanted her back in bed, dressed, pad on and that was that. I stayed after visiting hours that night to make sure she wasn’t left dirty.

Last night I arrived early to help out with her teatime needs. When I arrived she was being fed, nice to see and the lady who was feeding her was lovely an gentle. I then took over. Mum was disorientated and going through an angry phase, this can be quite normal for this time of the day though, you just have to sit it out and leave her to it, it passes eventually. Mum refused to take her meds with the nurse, I took over and managed to get her to take them, a little persuasion did the trick.

Obsessed with the golden boy

Well mum was disorientated from the get go tonight, also enduring one of her angry phases. All his didn’t help when the first task was a full pad/bedding change, she did however drink a full cuppa tea to try and calm her down.

Mum wasn’t happy with the pad position and got quite teary when she couldn’t get it sorted straight away. The nurses were all great tonight, quick to change and helpful.

She only really wanted Steve tonight, she was convinced he was there, I said likely with Mo on the box.

It turns out mum was prob right about the pad as 20 mins later she needed another full change, this time she was calmer and less agitated. I left her clean and dry and ready for a sleep. The bottom sore is getting worse but this time I manage to get some barrier spray on it as I helped with the second change.

She was thirsty though as she downed a full cuppa tea and a half cup of lemon barley.

I found it quite hard today, it’s the first time she’s ever looked me straight in the eye and said “I don’t know you do I”.

Why on time – every time?

If a person with Parkinson’s is unable to take their prescribed medication at the right time, the balance of chemicals in their bodies can be severely disrupted – and this will lead to their Parkinson’s symptoms becoming uncontrolled.

The Parkinson’s Disease Society’s (PDS) ‘Get it on time’ campaign aims to ensure all people with Parkinson’s in hospitals get their medication on time – every time. When they don’t their Parkinson’s symptoms become uncontrolled and they become very ill. This can lead to unnecessary extended hospital stays, using up vital resources.

Whether you are a hospital pharmacist, doctor or nurse, this good practice guide will help you to help people with Parkinson’s to get their medication on time – every time.

Read the rest of the paper, more doctors, nurses and health professionals should.

The Parkinson’s Disease Society of the United Kingdom
215 Vauxhall Bridge Road
London, SW1V 1EJ
Telephone: 020 7931 8080

Click to access 073_007_PDS_Infoguide.pdf

Ideas for action: healthcare professionals

Parkinson’s UK – Improving the integration of Parkinson’s services – Sheffield Teaching Hospital – (formerly Parkinson’s Disease Society)

Parkinson’s UK – Improving the integration of Parkinson’s services – Sheffield Teaching Hospital – (formerly Parkinson’s Disease Society).

The call back happened, shocked

Sister Agi Gollo, spoke to me for 50 mins after returning my call. She’s reassured me that there are some issues with communication between the nurses and that they will have a look at this to try and rectify this; what they can do though is in the hands of the nurses and how carefully they do their tasks for the day.

Forms section 2, 5 and section 2b discharge sent to social, so everything’s in placed for
Mums discharge, just need to wait until the social service contact my sister. Until that time I’ve emphasised that we want her safe, so limit chair times to visitor times and only put her in the wheelchair, with the seat belt on at all times. We don’t want any more injuries that will prolong her stay.

She noted down all the previous issues about male patients in the ward, hot teas in reach, drinks without beaker tops or straws, wet beds, Parkinson’s meds in her pad when changed etc etc.

Today she had a fall

My sister visited this afternoon and was greeted by a tired mum, mum basically lay asleep in the bed for the entire session. There was one break when my sister met another member of staff that took a lovely photo of a sore that’s getting worse on her bottom, the photographer and my turned my mum on her right side, the opposite side to the broken hip and my mum went ow, my sister didn’t think anything of this and carried on quizzing the lady about taking a photo of the sore on her leg that I found on Wednesday evening. Apparently, this is beyond her authorised area of taking photo’s, utterly ridiculous. She was also sans surgical stockings again.

After telling the staff on several occasions that mum is strong enough to move herself and shuffle out of the chair, she did just that today. My sister found out as she was leaving, no detailed info other than she ‘seemed ok, and said she wasn’t in any pain’. I’m not a doctor but if a woman goes ow when being turned that surely seems like an area for investigation.

I called the hospital tonight for an explanation only to hit a an information cul-de-sac… again. After a small rant and furious note taking of info, names and times I will eagerly await a call from the hospital tomorrow, I bet they don’t ring me and I have to chase them. I’ll spare you those details.

Bossy blisters

OK, on first reflection she seems fairly bright tonight, answered a few questions and seems lucid. I thought it would be nice to wipe down her legs and let her toes breathe a little, give her legs a little rest from the surgery stockings, all was fine until I found a huge blister.

She’s not really lucid at all now and this is moments later, her memories are getting all mixed up and she’s quite mad with me. Never mind.

Have to say mums blister has been looked at quickly tonight and a protective dressing applied, the nurses don’t seem as frazzled since the patient numbers have dropped, it only took them just over 30 mins and there was a shift change.

Content

Pleased to say that tonight she was calm, clean and dry. In fact the whole ward was calm, it did make me chuckle when two members of staff came around checking the tables, chairs and other dust traps and deduced that the dust above mums bed was indeed… ‘clean dust’.

We want her home

The bottom line is we want mum home, where she can get the level of care she deserves and is used to.

I took a phone call from my sister on Saturday the day after she had a meeting with Lewis, the Registrar, Rebecca the Occupational Therapist and Karen the Discharge Nurse. My sister is quite sensitive but she felt cornered and out of options after this meeting where she was told in no uncertain terms. “…she will not be discharged until certain care measures are in place.” This didn’t in fact take into account all the experience my sister has already gained from having to care for mum 24/7. At this point I said “I’m here to support you”.

My sister was asked to attend hospital at 10:30am Yesterday, Tues 8th and Wed 9th. I also said I would attend on day one for support and to make sure my sister didn’t get railroaded again.

We both arrived promptly, well my sister did I was my usual 15 minutes late. There’s was no one there and the nursing staff didn’t seem to be aware that we were there to spend time with the OT, DN and DOCTOR.

The nurses had given mum a suppository, which they were waiting for it to do its magic. She still has the catheter in at this point too. At this news I was hopping mad. I’ve got three kids that I arrange child care for and they couldn’t even be bothered to relay simple instructions.

Anyway 1 hour later and mum had a doctor visit but not from LEWIS, from the one on duty doing her normal rounds. I have to say she was helpful and informative, and she too couldn’t understand and why mum was given this suppository as the day before she’d passed quite a large amount. After checking her abdomen she confirmed there wasn’t anything compacted and she was nice and soft. The nurse confirmed to my sister that the urine was checked and positive for a urine infection, she later took out mums catheter.

So we wait again and eventually REBECCA the OT turned up. We got the rotunda and my sister started to learn to use this. By the two hour mark, my sister had successfully dressed mum, cleaned her and placed her in the chair.

Rebecca then did a vanishing act and eventually Karen the DN turned up, joined later by Matt another OT; it turns out she was never going to be there in the first place. But while they was there we asked them many questions. In the end we agreed to the adaptions, care provision, rotundas even though they will struggle to manage with them in the house etc and discussed a few extras.

Notable a one way slip mat for chairs… Why this wasn’t in place a week ago when the staff started to get her out of bed into the chair is anyone’s guess, it seemed obvious to me and my sister.

After this we left, mum was dry and comfortable in bed ready for a rest after all the exertion.

When I returned, it upset me to find mum in the same position, still clothed but that’s not unusual and WET. I helped the male nurse change her, I can’t prove it, but I would stick my neck out and say that her pad had not been change between 2pm and 7pm.

Mum normally has a 5 dot pad and these are 2 dots, simple not up to the flow for a woman who’s bed ridden with a confirmed urine infection.

The problems outlined

There have been at least 5-6 instances of her laid in her own urine. On one occasion it took 3 nurses to be asked before the third one actually came 35 minutes later to change mum and all the bedding.

Two mornings when she refused to eat her breakfast toast, once I started to sort out her denture during my evening visit this has miraculously stopped bring a problem.

I’ve found a Parkinson’s med in her pad during one of the urine changes. Anyone who understands the disease will know that it’s important to get the meds on time, daily to try and balance the symptoms.

Four occasions, to our knowledge, when mums drinks are left on her tray, within reach, without lid or a straw, I can only hope that this has never occurred with a red hot cup if tea. On the drinks we have also found numerous times that she’s had cold tea in a full beaker, so she’s clearly not been assisted to drink at these times.

Two cases of her being left in the patients chair after telling them she can move a little and she’s strong enough to shuffle off, which she nearly did while my sister was visiting in Sunday 5th August.

Three occasions when there’s been a male patient in the female ward. I asked him to leave and Mrs T’s visitors (her son) asked him to leave, the patient opposite mum also commented that he used to sit next to her and mum. I had a polite chat to a nurse and stressed how uncomfortable I felt having a man wandering around vulnerable women who aren’t able to alert anyone of a danger or issue.

It’s taken two weeks and me to ask to have a simple note popped on her whiteboard about the beakers as this message doesn’t seem to be getting through to the nurses and relayed to each shift.

That’s just the serious issues, there’s still dirt on the floor, rubbish in patient bags, blood stains from another patient which hasn’t been mopped up from the morning. No wonder one of the ladies in mums ward has now been moved to barrier nursing as she has sickness and diorreah and another two, Mrs T’s being one have I texted wounds. I know this as I visited for 4 hours during the morning and 1 at night.