“Excellence in specialist and community healthcare” aka “Just sit tight in your home because it will be months before we give you an appointment for an assessment for a wheelchair.”. 


About a month ago I asked Mum’s Occupational Therapist for a new collapsible wheelchair: her own was on the point of permanent collapse. I was worried the dodgy brakes might fail or one of the wheels fall off its axel. While we were waiting, two weeks ago, I had to take Mum to A&E for a broken wrist. A nurse observed that it was the worst wheelchair she had ever seen. So I mentioned it to the OT again.  This morning Mum got this letter. Apparently there’s a bit of a wait. They can’t even afford capital letters or a full stop for their slogan, so there’s not much hope for any actual “Excellence”. 

Thanks again, David Cameron, and your now historic insidious management of our NHS. I shall of course have to pay for a privately funded one. Or try to blag one on Facebook. 

Cheers. 

My Life Going Down The Pans. Part 5.

The final part of my attempt to explain why I am in no fit state to complain to Victorian plumbing about their non-flushable toilets, of which we have two. 

Wednesday 10 am. “Did they ever send me an appointment for my cataract operation?”

“No mum. I’ve phoned them 3 times now for a follow-up appointment after your first one, and they’ve all assured me that you would get something through the post.”

“Well phone them again.”

I phone the Royal Eye Unit. Again. After giving mum’s details, and explaining that this is the fourth time I have called, I say this.

“I am not getting off the phone until I speak to someone who will give me an appointment.”.

Amazingly, this works. It’s a technique advised by Teresa, who has had years of dealing with short-staffed and occasionally lazy and careless NHS administrators. We have an appointment for the following Monday morning. YES!

1pm. Mum’s mental health care nurse phones for an update. The phone call lasts for about 40 minutes we cover the mishaps.

7.30pm Mum calls. She’s in a bit of a state in the loo. I go round. I help clean her up and then get on with cleaning the loo, which in one way looks like a plasterer’s radio, but in other ways, doesn’t. The evening carer arrives at 8.30. I say it’s far too early for Mum. She says she has lots of other calls, it’s difficult to get them all to bed at the time they want. She is a nice girl, really and I feel a bit sorry for her. It is a struggle with Mum this evening as she is very tired and it’s difficult to get someone who is 79kg and hasn’t much use of her limbs into bed. Normally she gets herself into bed. We don’t know it but this is the beginning of a Urinary Tract Infection which will lay Mum low for a while. The evening carer says she really needs a device called a Sarah Steady, which would make the process of transferring Mum from sitting to bed easier for her. I promise I will ask the Occupational Therapy for one.

All these phone calls are in addition to running Mum’s house and garden, let alone my own life and work, and are mostly as a result of professional people not doing their job properly. I am pushing against a tide of negativity and can’t be bothered, what’s it got to do with me-ness, and that’s not even including my close family member who just visits on a three weekly basis and brings a shepherds pie.

Which is why, when Teresa asks me why I don’t phone up Victorian Plumbing myself to complain about their bloody toilet, I say, I just can’t face it.

In the end the job is done, with a tiny sink, and a flushable loo with an independent cistern, and now just needs decorating. Mum has already christened it, and pronounced it good. IMG_2086

But we are left with two non-flushable toilets and a cistern and a ball-cock, which in a better week, I decorate with flowers and herbs before my husband takes them to the dump.

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And thanks to the power of targeted advertising, I frequently see this.

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Thanks, Google.

Life Going Down the Pans. Part 4. Mum gets locked in the car – The Podiatrist.

In which I try to show another day’s worth of why I don’t have the energy to complain to Victorian Plumbing about their non-flushable toilet pans.

Tuesday Morning . I think the Prochloperazine situation is sorted now, after another conversation the following morning with a Doctor, a new Doctor, and actually a very nice Doctor. Can’t wait to see what happens with the August prescription.

10.15. I arrive at Mum’s. She has an appointment with the podiatrist at Surbiton Hospital at 11.00. It’s a fifteen minute drive at the outside, but we need to start to leave 45 minutes before the appointment as it’s difficult for Mum to leave the house, and get in and out of the car.

“Have you been to the loo?”

“No.”

I notice she is struggling to walk with her frame, and as we are in a hurry, I take her to the loo in her wheelchair.

10.25. At the back door. I’ve taken her so far by wheel chair, but now she will have to get up and step down two steps, using the rail that Occupational Therapy have put in. She just manages the steps and I get the wheelchair in behind her again and wheel her to the car.

10.30. It’s very difficult for her to lift her leg into the car. I have to remove the wheelchair, and support her weight with my body behind her, as she transfers. I throw the keys over into the driver’s seat so that I have my hands free. It takes a good five minutes.

10.35. When she’s in, I shut the door. The car alarm goes off immediately. She’s locked in the car somehow and the alarm is horribly loud. PAAAAAARPPPPPP

She looks at me. She can’t hear anything.

“MUM! THE KEYS ARE IN THE DRIVERS SEAT!”

PAAAAARRRRP

“What?”

“THE KEYS ARE IN THE DRIVERS SEAT!”

“?”

“THE KEYS!!!!LOOOK!!!!” I circle the car, and point, madly, at the keys.

PAAARRRRRPPP!!!!!!!!!!!

She struggles to lean over, and picks them up and drops them. She looks at me, smiling. She’s a bit deaf and the alarm probably isn’t bothering her the way it’s bothering me.

PAAAARRRRPPPP

She persists and this time picks them up and looks at them.

“MUM!”

IMG_2085She’s still looking at them. It’s a big bunch of keys by any standard. I often look at them and wonder what half the keys are for, but the other half are for the car, my house, her house, the house in France, two possible keys that don’t work for the postbox to the house in France (I get the letters out with a bent wire coat hanger), bike padlock key, Waitrose card fob,  and most bulkily and uselessly, a mobile control which doesn’t work, to the burglar alarm for her house.

PAAARRRRP

“MUM! PRESS THE BUTTON ON THE CAR KEY!”

She looks at it. Car keys have changed since she she last drove a car.

PAAAAARRRRP.

I mime pressing a button. The next door neighbour comes out with a crying, sick-looking child in her arms.

“Is everything alright?”

PAAARRRRPPPPPPPPPPPPPPPPP

‘I’m really sorry!”

Mum looks at me, waves at the neighbour’s crying child, and drops the keys again.

PAAAARRRRRRRPPPPPP.

She picks them up and presses buttons on the burglar alarm remote.

Eventually she presses a button on the car key. That magic click happens and all is quiet and possible.

11.00 We leave.

11.15. The traffic is heavy, and we arrive at Surbiton hospital car park, already fifteen minutes late for her appointment. All the disabled bays are full.

11.20 We have a similar trepidatious transfer from car seat to wheelchair seat, with me taking Mum’s weight as she swivels around, but finally we are in the lift at Surbiton Hopital. “Life going up.”, says the lift.

11.21 I check in on the screen, and also explain to the receptionist that we are late, and ask if we are too late?

“No, no, you will be fine. Lots of people have been late today because there has been an accident on the A3. Just sit down and wait and you will be called.”

Various clinicians appear and call people in to have their fungal feet fumigated, hard skin filed, corns plastered, bunions caressed. Or whatever it is podiatrists do to bunions. Bunted maybe. Bunions bunted.

Time passes. Listen. Time passes.

11.41 I ask the receptionist if he is sure that we are ok for our appointment. He is very nice and reassuring. Yes, he is sure, don’t worry, it’s because lots of people were late because of the accident and everybody is being seen late.

12.00 I go back to the receptionist. One of the clinicians is standing at his side. “What’s the name? But you are so late! Your appointment was at 11.00! I called you twice, the last time, I am sure it was 11.15. I am really sorry but you have lost your appointment.”

I explain why were late and that we have been waiting for forty minutes on the advice of the idiotic but nice receptionist whose ears I mentally box for not telling the podiatrist that we have been here all that time.

12.05. The podiatrist agrees to see Mum, and in five minutes of deft know how she cures mum’s painful big toe, caused by a corn under the toe-nail, which has been bothering her for YEARS, (I never knew corns under the toe-nail were even a thing. Did you?), and praises Mum’s feet as good feet, which Mum really loves. We all like to think we’ve got good feet.

12.15 “Life going down.”, says The Lift. “She said I’ve got good feet,” said Mum.

3.30 I see Almaz, the carer, at Mum’s after I have done the shopping. She says it would be good if there was a commode on wheels. I phone up the Occupational Health department to ask for one and also for a ramp for the back door.

“Is your Mum in a wheel-chair?”

“Well sometimes. But she uses a frame mostly.”

“We only install ramps for people in wheel-chairs.”

“She will be in a wheel-chair soon enough if she has to get over the thresh-hold with that frame. It’s a real risk. I’m always frightened she’ll fall.”

“Alright, I will put her on the waiting list. 9 weeks.”

“Thank you.”

Well, that was progress……but there was more…..

Life Going Down The Pans. Part 3. The Chemist.

In which I try to explain another reason why I don’t have enough energy to complain to Victorian Plumbing about their non-flushable loo pans.

Monday  July 4th . The Chemist.

11 am. Mum’s pills are dispensed monthly in packages called dosset boxes. There is always some anomaly and I have learnt to take nothing for granted.  I had already popped in on Saturday, to tell them we would run out by Monday morning, but they weren’t ready.  I had made up Mum’s Monday morning pills from spares  that I had at home.

Really sorry, they aren’t quite ready. Come back after lunch?”.

IMG_2002(One of Mum’s dosset boxes is pictured above. I took this photo last Sunday to show the Carer’s Organisation that the girl who came last Saturday did not give Mum her pills. They include a diuretic. And that’s probably why her ankles swelled and she wasn’t able to walk for three days…..but that’s another week…………)

2.05 pm. The Chemist. Sorry! Not quite ready! Just doing them now. We’ll post them through the letter box later!”

The letter box isn’t big enough, and if I’m not there and you knock, Mum might fall over getting to the front door. When will they be ready?”

“Come back after 3pm.”

3.15 pm. The Chemist. I had picked up the pills, and taken them home, given Mum her afternoon tablets, spotted one was missing from the box, twice a day, every day, and brought them back.

“You’ve missed the 10mg amitriptyline dose.”. 

“Oh! Sorry. Give us an hour and I will put them in.”.

4.15 pm The Chemist. This time I look closely at the boxes before I take them away. I see I’ve missed something.

Why is the prochlorperazine in a separate box, and not in the dosset boxes?”

Because the doctor has prescribed them to be taken when needed. I can’t put them in the box without the Doctor’s specific instructions.”

But we discussed this last time and you said you would do it! You put them in the dosset boxes last time.If they are not in the dosset boxes the carers won’t give them to her.”

I’m really sorry. I can’t do it. You can do it at home.”

But I will have to break the seal on the dosset boxes and the pills will fall out.”

Ok, you can do it here and I will reseal it for you.”

4.30 pm The Chemist. In the dispensing area of the chemist, I break the morning and afternoon seal on 28 days worth of pills, insert half a prochlorperazine table, which will keep my Mother’s schizophrenia suppressed, and the chemist reseals the boxes for me.

5pm. My mother’s home. I reflect on how this happened. In April, before Mum was allowed home from hospital, I asked to look at Mum’s medication list. I noticed that the prochlorperazine had been removed. I asked why. I was told by a young doctor that it was an anti-sickness medication, and that as Mum was not feeling sick it was unnecessary. I had to point out to a Hospital Doctor that this medication is a first generation anti-psychotic, and was keeping my mother from madness. It was also an anti-vertigo drug, and was helping her stay upright. It’s widely prescribed as an anti-sickness drug, but that’s not why Mum has it. “Oh!”, she said and looked it up on her computer. She said she would reinstate it, and she did, but as 3x a day or as needed, for sickness. Since then I have had conversations with the chemist and the doctors at the surgery, and I sent a note to the surgery as the conversations with three doctors had no effect. 

IMG_1523

The reply to this note was a letter, saying that the prescription was for sickness.

IMG_2080

In a subsequent conversation with this GP, I had to point out to her that this medication’s original use was as an anti-psychotic, and that although it has these other effects, for which it is widely used, it is still a goddamn anti-psychotic and it works for my Mum, for both vertigo, and most importantly, her bloody psychosis. But without the swearing.

“Oh!” she said, “You want an off-licence prescription! No problem.”.

So far every month since April, there has been a problem with this particular medication not being in the dosset  box, not to mention omitted pills because the chemist just forgot to put them in. How hard is it?

And the week went on….

Life Going Down The Pans. Part 2. Mum’s marooned……

……………..or why I can’t complain to Victorian Plumbing. Saturday 2nd July. My home.

8.30pm “Could you come round and help me. She’s left me in bed without the zimmer frame and no telly. I was watching the football!”

 

8.45pm. Mum’s home. I go round to discover that Mum has been put to bed at 8.10. Her zimmer frame has been left on the other side of the room. as are  her shoes and the remote control for the television. Mum is stranded in her bed at a child’s bed-time. She had been enjoying the European Championship football her front room, like the normal person that she is.

The previous evening a similar situation had ensued, and I had phoned the Care Agency to protest. As this was the second time in a row, I not only phoned the agency, I also sent them an email.

This evening at about 6.30 I telephoned your office to pass on my concerns about the Carer who has attended my mother on Saturday evening. 
Stating this again – she came in at 8pm while mum was watching the Germany Italy match and told her she had to go to bed. Mum protested that it was too early, but she was made to go anyway. She was then left in bed with the Zimmer frame in the other room, and her shoes on the other side of the room, making it completely impossible for her to use the commode in the night. She also left mum without the remote control to the tv in the bedroom, which meant mum missed the end of the match. 
I left the Carer a note expressing my concerns. She totally ignored it. 
Tonight she came at 8.22. Here’s a picture of how she left the room, Zimmer frame and shoes, and the telly. 

IMG_1769

IMG_1770Luckily enough I can check up on mum with video cameras. So I am at her house now and have put the zimmer and her shoes next to the bed. It’s now too late for mum to watch telly. She has been looking at a blank screen for 2 hours. 
I really don’t think this is right and this Carer should be retrained. It looks like her name is………

To date, this email has received no reply, but further phone calls have elicited promises. I know these are empty, as it all depends who they can send. Mainly the carers are very good now, but sometimes they are useless.

10 days later on the 10th July, this happened.

IMG_1930

If Mum was able to vault over a bed rail to use a commode, she wouldn’t need a carer, a bed rail, or a commode. To compound the stupidity, one of Mum’s phones was left on, which meant that had she felt she needed to press her Age-Uk alarm for help, because just for instance, she couldn’t get out of bed, it wouldn’t work, as it needs the phone line. Fortunately I went round that night, as I was worried that she was having problems getting in and out of bed.

I complained again……….and the week went on…..see part 3

 

 

 

My Life Going Down The Pans. Part 1. The unflushable toilet pans. 

IMG_2006

Thursday July 7th.

9 am. My home. “Why don’t you phone up Victorian Plumbing Customer Services and just complain to them until you get something done?”, said my friend Teresa.

Teresa lives up the road, and is incredibly competent. She has recently retired from running Maternity Services for two major hospitals and now has an expert witness consultancy for maternity legal cases, while keeping her hand in doing the odd 12 hour shift as a regular midwife at Kingston, and a weekly doppler scanning clinic for St. Georges. She’s a get-things-sorted woman.

I’ve known her since our children were very small, some thirty years now. We go walking around Berrylands in the morning when we can. She has helped keep me sane in the face of family breakdown and I have cured her creaky knees with Emmett Therapy and Pilates. It’s good for both of us to do an hour’s walk two or three times a week.

Teresa’s recommended general builder has been converting the downstairs larder in to a loo for us, so that it would be easier to have Mum to come and visit. It’s a tiny area with a partly sloping ceiling. There really wasn’t enough room for a handbasin too: and if we did put one in, it would be in just the right place for Mum to pull herself up on and pull the basin off the wall.

A wonderful solution came up: have a “close-coupled” loo with a small wash hand basin on top of the cistern: the waste from the basin would feed the cistern, which would flush the loo. Marvellous, environmental sense, we thought.

We found such a thing on the Victorian Plumbing web-site,Screen Shot 2016-07-18 at 11.48.40

from where, incidentally we were ordering a bathroom for upstairs. It’s a Downton Abbey bathroom. Nothing to do with me; my husband ordered it and it’s very nice. The plumber now calls me M’lady. I call him Sean, among other things. He and his side-kick Paul have haunted our house on and off for 13 weeks in a miasma of tea, diabetes, and shoulder-hunching disasters, including leaks necessitating ceilings being replastered, a shower being fitted that would accommodate people of 5’8 and under, (Sean is of short stature) and the drains bubbling up under the paving at the side of the house.IMG_1170.jpg

The low flush loo, the cistern, the parts for the cistern and the basin, all arrived. The trouble was that the low flush loo would not flush toilet paper down the U-bend. We didn’t try it with anything else. At various times over the following weeks the loo, the cistern, the ball-cock parts for the cistern were returned and replaced amid phone-calls, argument, threats, apoplexy, demands for videos of the faulty flush, head-aches, emails, denials from the manufacturer that the items should be sold as a package, and denial from Victoria Plumbing that the debacle was anything to do with them.

My husband got involved and got nowhere.

Sean, (as Paul didn’t need to point out, as he was regularly and loudly fired for his minor but irritating incompetences), is on a very short fuse. This might be on account of his diabetes. Sean discovered he had diabetes because he nearly punched a woman in a minor road rage incident, realised that he didn’t feel right, (although the incident was, of course, her fault), and took himself to the Doctor.

The upshot was that Sean has diabetes and the toilet pan only has holes at the front for the water to flush through: the small cistern does not exert enough force to do it’s job. I mean, it only has one job.

Listening to Sean coming to the end of his short fuse as he took up the case of the experienced plumber against the manufacturer and the retailer of plumbing equipment with a fundamental design fault was educational if not salutary or particularly effective.

Anyway, it took THREE MONTHS for all the work to be completed, and it’s fixed now, and a good job done,  but at the time of this conversation we were still in the middle of plumbing chaos; toilet pans, ball-cocks, and cisterns everywhere; in the hall, outside the house, and on the kitchen work-surface; and Teresa wanted Sean to finish our job and start her decking job.

So why didn’t I phone up Victoria Plumbing and get it sorted? I tried to explain just how much complaining I have to do.

So far that week, and this is quite typical……. (see part 2)…….

Why do I support Mum in her own home?

Why do I carry on supporting my Mum in her own home?

I was having a conversation with Almaz, Mum’s carer the other day. It’s not an easy job for either of us, and Mum has recently had a urinary tract infection (UTI), which means that at times she can barely take her weight at all, and she is quite confused and very sleepy. She has had a couple of falls and has injured her right wrist and her ribs. They are possibly fractures, but according to Mum’s GP they are the sort of fractures that are untreatable, and the probability is that if I take her to hospital  for X-ray they would keep her in. As we’ve learned, hospitals are not the best place for the elderly. Infections, confusion with medication by medical professionals, and a sort of benign neglect seems the order of the day. I know Mum would be at no risk of falling, which she is at home, but she would be at certain risk of being bed-bound. Every time she has gone into hospital it’s been noticeable that Mum comes out less able than when she went in. There is some nominal physiotherapy but resources are so stretched that it’s ineffective. Muscle atrophy is a real and present and life-threatening risk.

Keeping Mum safe from falling in her own home, which is where she wants to be, is very difficult. It’s difficult because Mum has vertigo sometimes, when she just falls with little warning. She describes this as “my brain goes sideways”. Sometimes she just overreaches, trying to pick something up off the floor, or mis-judges where the chair is. When she has a UTI, she can just get weak and confused and fall. She might go for months without falling and then fall three times in a week.

Ideally Mum would be living with me, but she doesn’t want to.

It would not be too unreasonable for me to insist that Mum goes to live in a nursing home and hope that she would get used to it and would not be too unhappy. But I don’t want to.

I have visited lots of nursing homes over the last two or three years, most recently with the idea of convalescence which I thought Mum needed, weakened as she was after her last stay in hospital. I thought there would be homes out there, specifically dedicated to getting elderly people back on their feet, with physiotherapy a priority. In fact there is nothing which matches what has turned out to be a Utopian dream: my best bet turned out to be expensive (over 1,500 quid a week), down at heel, smelling of wee, and inhabited by the drooling. The other option, and there were just two within a ten mile radius of me, (and I live in a heavily populated part of the world with good infrastructure), refused to have her because of her schizophrenia. As her symptoms are limited to paranoia about a woman visiting her own home, it would not have affected them, but they would not be persuaded.  As I’ve blogged earlier, the NHS option, Tolworth Rehabilitation Hospital, isn’t worthy of the name for people like my Mum, although at least it’s clean.

In the previous year I had been looking for somewhere suitable to take my Dad when he was dying and had exceeded his stay at the Princess Alice Hospice. The best, newest nursing home in the area is Brook House: it’s got awards. I had a conversation with the family Doctor the other day about Brook House.

“Don’t you think it’s time now to persuade your mother to go into a home? What about the one that your Dad was in?”

“Brook House, Doctor, is haunted by the demented. They float up and down the corridors, They were always in Dad’s room if you remember. They’d drive Mum mad. She’d hate it.”

“Your Dad took it all in very good part!”

“Yes but he knew he didn’t have very long left. He was going to die. In fact he made his mind up after a few days there that he was going to die as soon as he could. And he did. Not that the staff weren’t nice, most of them were very good to him. But if he had stayed in the hospice he would have lived a bit longer. Anyway it would be depressing for Mum. She would hate it. So as long as we can Doctor, we will keep her at home.”.

Not long after my Dad died my sister suggested that we book Mum into Brook House for some respite for me, as she wasn’t going to help out. She proposed putting Mum into one of the quiet rooms on the second floor. Maybe she didn’t know that the quiet rooms are put aside mainly for the dying. They didn’t have any available for Dad until his second week, and he said he’d rather die surrounded by the life that there was than nothing at all.

Maybe she thinks Mum is anti-social, and wouldn’t bother about being in a room on her own: Mum won’t, for instance, go to social clubs for the elderly. Mum’s problem is not that she is anti-social, but that she is quite shy, and part of that is on account of her accent. She comes from Southern Ireland, and her accent is strong still after being here since the mid-fifties, and people do have a problem understanding her. But she is very interested in other people and observant. She likes to talk to people who make the effort to  understand her. She’s interested in politics, was in the Remain camp, couldn’t believe Brexit, or the current Government shenanigans with Gove, Boris etc. Putting her in a room on her own in the home where her husband had just died in a quiet area where people are looked after while they die was not a goer.

Anyway, I began this entry about a chat with Almaz. She said “I understand. The thing about your Mum is that she never gives up. Even when she falls, and I help her to get up, she’s laughing, she’s positive. She really tries to be independent. It seems impossible, but she keeps going. Her attitude makes me want to help her.”

Mum really does not want to leave her home of 36 years. She loves her home, and it’s all equipped for her to live downstairs. She now has carers in to help, which takes some of the  load off me. We just about keep things going and try to keep her on her feet.

Mum has been through a hell of a lot in her life. Probably more than you. Certainly more than me or my sister. Poverty, hard work, emigration, cruelty, extreme mental illness, frequent falls, pain. That’s an amazing amount of experience, although it took just one sentence to say it. I respect all that. And she is still laughing at the age of 82 and she still wants to keep going. As long as I can, I will support her.