No Good Deed Goes Unpunished, or “Where’s Home?”

I was in Casualty at Kingston Hospital last Thursday with one of my sons, who had a condition in his lower limbs which was both painful and mysterious. We thought it might be sinister, maybe a blood clot, and the doctor gave him a letter and told him to go to A&E. It was 6pm on a Thursday night and the waiting room in the front had only about a dozen people in it.

One of the Triage nurses is a friend’s daughter, a dusky rose, and she greeted us, and said that although it looked pretty empty, they had been very short staffed and behind the scenes it was heaving. Prepare for a wait, and Goodnight, her shift was done.

We both had books. He had Dostoevsky’s The Idiot. I had the latest Granta. Although we were worried about him, we were at least in the hospital. It was warm. The chairs are pretty comfortable. The reading was good.

And then it started to fill up. A builder arrived at about 6.30 and sat opposite us. He’d been told it would be a long wait. How long had we been waiting?

About half an hour, we said. What had he done?

“It was this morning, I was up a roof and drilled a bit out of my finger.” He held up his left index finger with a none too clean tissue wrapped around it.

He unwrapped it and a bloody bit of meat was exposed, dirty, with a bit of transparent flesh flapping off it.

“It’ll need stitches.”, he said. “I’ve got a scar on my forehead which healed with a ridge because I didn’t get it stitched. Look. Thought I was hard, see! Huh! If this heals with a ridge, it will interfere with how I work. I need my hands.”.

“Why didn’t you go this morning?” I asked.

“I work for myself. I had to finish the job. Get the day done and the money in. It was a cash job. I’m owed so much money on invoiced jobs at the moment that I can’t make ends meet.”.

“Oh dear.”.

“So I just wrapped it in tissue and carried on best I could.”.

A woman in a hijab emerged from behind the scenes. She was talking on a mobile and had a folder of notes under her arm, and was headed straight for the exit to the car park. Another woman followed. “Come back! We need those notes. You must come back in. Come!”. I wasn’t sure if the would-be escapee was a patient or a Doctor.

Now nearly all the seats were full and it was getting noisy. Sick babes were moved on in pretty quickly. There were some very ashen faces, people with arms in home made slings, people limping about, all accompanied by one or two friends or relatives. About a fifth of the sick people were recognisably not English and they had even more supporters with them.

Three blokes came in, builders, young men. The one in the middle was in shock, covered in brick dust, and his head was decorated in pink stuff that had been blobbed out of a sort of syringe, like a mastic gun. His eyelids and eyebrows were blobbed in pink. He had to be helped round, presumably he couldn’t see. It was 8pm by now.

We noticed an elderly bearded man on the other side of the room. He had an old tweed overcoat on, and a pair of track-suit bottoms and boots. There was a thick gold chain around his neck. That was all. His overcoat was open to his bare chest. He looked miserable. He got up and went over to the desk. “I want to know about patient transport. I’ve been waiting hours now. When will it be?”

“I don’t know.”, said the man at the desk. “We will let you know.”. The old man plonked himself down again.

And I didn’t see this, we were at the back of the room, but I heard about it from a woman called Joan, who I met the following day, and who was admitted from Casualty into the Acute Assessment Unit (along with my mother who was delivered by ambulance half an hour after I took my son home – it was a long night for me), because her stomach had swollen up like a nine month pregnancy on account of a kidney dysfunction caused by acute constipation, and who recognised me from the night before. An elderly couple were sitting in front of the reception desk. He looked just awful. Then he fitted and his head lolled to the side. His wife screamed. Joan shouted to the receptionist, who said, “Yes, we know about him.”. Joan said “But I think he’s dead! Look at him!” Nothing happened. No Doctors came out. Joan shook his shoulder and he came back to life.

That happened a couple of times before he was admitted.

The old man with the gold chain and nothing but hairs to keep his chest warm approached the desk again. “But when will it be? You don’t understand. I’ve been here all day. I need to get home.” Every “e” was elongated, pleading.

“How long is a piece of string?”, said the receptionist.

“I don’t know? Please tell me? How long is this piece of string?”

“Look we’ve got one ambulance for patient transport. And a whole list of people who need it.”

“But how long? Please give me some idea.”

“Two hours. At least.”.

“Two hours!”. He walked back to his seat and cried.

My son and I looked at each other. Poor man. This was very hard on him. We decided to pay his fare home. It wouldn’t be much more than a fiver. I looked in my purse. I had twenty quid and some shrapnel.

I went over and sat down next to him. He smelt mildly of booze, like a pub at eleven in the morning.

“Hallo” I said, “I’m sorry you are having trouble. Have you thought about getting a cab?”

He looked at me with big soppy blue eyes, and emptied his pockets. “I haven’t got any money.”.

“Don’t worry, I’ve got some.”, I said. “Would you mind if I paid for it?”

“That’s really kind of you, but I don’t want to be a charity case.”, he said, grabbing my hand. He didn’t smell that bad really.

“Well it sounds like it’s going to be a long wait.” I said. “Are you going to be ok?”

“Not really. I’ve been here all day. It’s been a long day.”

He sighed.

“How are you feeling at the moment. I mean can I get you a drink of water? Would that help?”

“No, no thank you. I’ve been drinking water all day. I could do with something stronger if you know what I mean!”

I knew what he meant.

“Please let me get you a cab. Look, there’s a free phone over there for the cab-service.”

“Are you sure? Well if you’re sure, that would be so very good of you.”

I was on my feet and moving towards the phone. “Where’s home?”, I asked. “XXX Sunbury Road, Walton.” he said.

Walton! What the bloody hell was he doing in Kingston A&E!!

It was absolutely too late to back out now, in the middle of the waiting room, between the old man I’d offered to help and the phone.

I explained the situation to the cab firm. “Well it will be £22.50.”, she said. “Has he wet himself?”.

I don’t know why she asked this. It was as if she could see him more clearly than I could.

“No, he just smells a bit of alcohol. But he’s been in hospital all day. It’s stale, quite mild really. But hang on a sec, let me check I’ve got money.”

I had £23.37 in my purse.

“Go ahead.”

“Ok, so the driver will be there in about ten minutes.”.

I went and sat down next to him again. He was very grateful. And so he should be. “You’re so kind.”, he said. “I’ve been here all day. It’s been so awful.”

“Why did you come here?”, I asked, “Don’t you have a more local hospital?”

Walton is so far away in this tight urban landscape, about a fifteen to twenty minute run, and it’s behind the back of beyond and then some, and I haven’t a clue what the hospital situation is like there.

“Yes, I’ve been to St. Peter’s several times, but they were no good. I thought Kingston might be better. But they were no good either!”

“What’s the matter?”

“I’m just so worried. I’m worried all the time. My Landlord wants to sell the bungalow and evict me. It’s so stressful. I feel very unwell.”.

“Oh! That’s awful.”

“Yes but the doctors and nurses just won’t listen. The problem is that none of the staff are English. They are all Johnny Foreigners. England’s not like it used to be. I can’t understand them and they can’t understand me.”

Ah.

In the background I can hear someone say. “If it wasn’t for foreigners, there wouldn’t be an NHS.”, which were my thoughts,  projected.

“Not one, not one of them was English. They just don’t understand. They come over here, taking our jobs. England should be for English people. Like you and me!”

I didn’t tell him I was half immigrant Irish, and married to an immigrant who was a hard working leading scientist, and I wasn’t clever or hard working enough to be a Doctor, and what’s more I suspected that neither was he.

“Are you a Doctor then?”

“No, I was an engineer. Why don’t they just go home to where they came from?”

“Well a lot of them were born here.”

Like my boys. They are a quarter English, and a quarter Irish, a quarter Italian, a quarter Kosovan. Where should they “Go home to?”. I didn’t voice this. They’ve got this foreign name. It was something my son and I had just been talking about. Was that going to be a problem for them in this new Brexit world.

“They can go where they like but they should leave this country to the English! Make it great again!”.

Oh dear god. What to say here? I learnt a little from Brexit. Picking arguments with selfish stupid old Xenophobes like you, self obsessed distant relation, who wanted an end to immigration and thought that leaving Europe would put a stop to, not the Europeans, because you had nothing against the Europeans, it was those Pakistanis you wanted out, or you graceless local politicker, who wanted more control of our legislation, which was fair point though, but we could stay in and change it, and you, my mum’s gardener, who voted to leave just for a laugh, to see what Boris could do, because, you know, he’s so ridiculous, and that’s one in the eye for Cameron, does not make me happy and did not change their viewpoint. I mean, nobody liked Cameron. But don’t give us Nuttall and the UKIPS and a right tight little England in his place. Don’t give us stupidity and lies. Don’t, for Christ’s sake, give us America.

At that moment the cab driver arrived. He was Asian.

“See? They are taking all our jobs.”

“Oh, do you know, cab-driving is definitely not for me. Or you.”

“No, I suppose not.”

As we said good-bye, he said, “You will come and see me, won’t you! You’ve been so kind to me. Will you phone me! I will pay you back.”

I said “Of course.”

“But how can you, you haven’t got my phone number!”

“It doesn’t matter. Just be kind to someone else. That will be good! Good-bye, and good luck!”

And I kissed him on his fluffy bearded cheek, because he was a poor old sod.

I went back to my son. “This is like a zoo, Mum. I wish we could go home.”, he said.

Yes, but where to?

Anyway, that passed the time.

My son gets called into Minors at about 9.15pm. Minors consists of a series of half a dozen cubicles big enough for a chair, a small waiting area, and a desk area. The nurse, a skinny lad, possibly Vietnamese, with an interesting top-knot held together by a kirby grip and an elastic band, shows us into cubicle 3, and points out our doctor, a West African woman whose hair is styled with what looks like lard, but can’t possibly be. She immediately comes over and tells us to vacate that cubicle and disappears into cubicle 4, emerges, and then disappears completely. After a few minutes, nobody else comes to cubicle 3, and we discuss occupying it again. The Doctor comes by again, brandishing notes and calling my son’s name.

Where have we been? She asks.

Here, we say.

But I’ve been calling you, she says, why didn’t you answer?

But we’ve been here. The nurse put us into cubicle 3, and you told us to get out of it.

But I went into the main waiting room to get you. ……

But the nurse called us, we saw you, and you told us to get out of the cubicle…….

Our faith in the Doctor was wasting away.

But as it happens, she was very good. Tests were done, and although she could not say what was wrong, she could say, with confidence, that there was no blood clot, no kidney problems. Go home and if it persists, go back to the GP, was the advice. And he’s now better. It was a thing, but not a persistent thing, and hopefully it won’t come back.

In the middle of all this my mobile rings. It’s Dinka, Mum’s Bulgarian carer. Mum’s not well. What should she do?

It was going to be a long night.

All Calls Are Being Diverted To Us.

3pm Friday September 30th 2016.

RING RING RING RING

Vapid young female South London voice. Hello?

Me: Is that Social Services?

VYFSLV……..All calls are being diverted to us.

Me: And you aren’t Social Services switchboard then?

VYFSLV: No.

Me: Who are you?

VYFSLV: We are in another building. All calls are being diverted to us. Really sorry.

Me: Well could you put me through to Katie Xxxxx. She’s my mum’s social worker and it’s really important.

VYFSLV: I can try.

Me: Well yes please, try.

RING RING RING RING

VYFSLV: Hello?

Me: Is that you again? You were putting me through to social services!

VYFSLV: All calls are being diverted to us. Really sorry. We are in a different building.

Me: A different building? And you can’t connect me to social services? What are you? Some sort of dead end?

VYFSLV: I’m really sorry but all calls are being diverted to us.

Me: Could you try someone else? Try Rxxx.

VYFSLV: Well I’ll try.

RING RING RING RING

VYFSLV: Hello?

Me: You again.

VYFSLV: I’m so sorry. Really frustrating isn’t it. It’s been like this all day. All calls are being diverted to us and we are in a different building. Really sorry.

I was calling from the acute care ward at St George’s Hospital London SW17: Mum had been blue-lighted there after a suspected stroke. (We are finding out that she may have had a mini-stroke, but her acute collapse is as a result of an infection, probably urinary,  which had penetrated her blood cells.) I particularly want to talk to Social Services, as this emergency is partly the result of the inactions of the carers employed by their agency. I don’t know what to do about Mum’s care.

But all calls to Social Services in my now Kafka-esque world are being diverted to a tired young woman in a different building, including the calls she makes herself.

I can see now, on the CCTV recordings of the two calls that the carers made to Mum, that she had been very unwell that morning. She was too ill to get out of bed at 6-7, and she refused her breakfast, both very unusual. They washed her and left her and turned the lights out. She had actually asked to go to hospital. On their return at 10.00 am she was still very unwell, could not get up, and they fed her her porridge in bed. I was unaware of all this but I phoned at 10.30 to ask if she was alright before I went out with a friend for the day. I was told no, she couldn’t move her left arm and could not get out of bed.

I went round, the carers were gone and all signs were positive for a stroke – tongue tracking to the right, lop sided smile, not able to lift left arm, confused and dozy. So I called 999, the paramedics arrived and wanted to know when this happened……..well it was before 6, which meant that the crucial 4 hour window for stroke treatment had overrun.

Social Services came in in April this year when I stepped down from my role as Mum’s carer, exhausted and overwhelmed. I found myself overseeing the motley crew of carers from a private care agency and their various disastrous interventions some of which I’ve blogged about before. The low point was when mum was thrown on the bed, her arm in plaster, by a carer who was frustrated at the lack of equipment supplied to help her. This went to the police, as my son had seen it on CCTV and Mum had complained to her support worker the next day. The matter was eventually dropped after weeks of police intervention. Other carers have just been rude or stupid and I have complained endlessly, changes are made, hope is created, and then one way or another, shit happens again.

For instance, on September 6th. Mum has just returned home after staying in a respite home, organised by Social Services – in some ways they are really very good to us, and credit where its due – so I could get a break.

The night call.

Video 1

Two carers. Mum in the front room in her arm chair.

Carer 2 does not say hallo but stays in the hall.

Carer 1 sashays across to turn the telly off

Carer 1 How you like your stay in the home?

Mum, animated and friendly It was quite nice actually. They were very good to me there.

Carer 1 now on her way back towards Mum.

Carer 1 How you going to like living there?

Mum shocked. I don’t want to live there. I want to stay here in my home.

Video 2

Mum is hovering above her seat, but can’t get up. The two carers stand looking at her.

Mum Well help me won’t you? You can see I need some help.

Carer 2 Oh, you want us to help you.

Carer 1 If you want us to help you, you must tell us.

Video 3

This is sound only. Mum’s arm is broken and in plaster. I think Carer 2 is helping her out of her clothes.

Mum You are hurting my arm. Please be careful.

Video 4

Carer 1 and Carer 2 stand watching as mum tries to get into bed

Mum Give me a hand will you? You know I need some help getting into bed.

Carer 2 gives her a shove and Mum falls on the bed. She’s not hurt but she’s really cross.

Mum Oh! You’re just fucking horrible you are. What’s the matter with you!

Video 5

Carer 1 and Carer 2 leave and put the light out

Carer 1 I don’t know what was wrong with her tonight.

And they leave without saying good-bye.

After I complained and sent the videos up to the agency, these two women have become model carers, polite, and helpful. I think they were particularly rude to Mum at that time because the police were pursuing their colleague on her behalf, but who knows. It’s a tough job, underpaid, and fairly easy to get. They don’t get paid for their travel time. Generally they do as little as possible in as short a time as possible. I’m sure that’s not true for everybody. But it is for most of the people mum has had “caring” for her.

And now, after this particular crisis last Friday, I can’t even phone Social Service’s switchboard. So I try Rxxx’s email address which I had taken down by hand at a meeting a few days before. After about half an hour, and no reply, I think I have noted down the wrong address – it’s quite a complicated one, and so, battling with intermittent 4G, only accessible at the end bay of the Acute Ward, which is fortunately empty, I google her and send an email to the address listed on the official Trust web-site which differed by one letter from the one I had noted, and got this in return:

postmaster@swlstg-tr.nhs.uk

Undeliverable!

Delivery has failed to these recipients or groups:

Rxxx Social Services (her email address with one letter wrong).

4G has now disappeared and I have to leave Mum to go outside. It’s now 4.55 and I try the number I have for Occupational Therapy: Mum’s OT is nice, sensible, and surely, I think, will be able to put me through to a Social Worker. But she doesn’t answer the phone, and I speak to a very cross woman who clearly thinks I am stupid.

I try email again, adjusting that one letter from the official entry on the web-site to the one I had scribbled down, and get through to Rxxx after the end of the working day, only because she happens to be working late. She replies and phones immediately.

As of now Mum is still in St Georges, her acute care was phenomenally good, but she has suffered from some very indifferent care on the ward there too. Some amazing nurses and some who really couldn’t give a shit. But at least I can complain to the right people.

Mum might be going home today……………………I have to talk to Social Services this morning.

“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. 

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.

The Rehab hospital that pretty much isn’t.


I will preface this by saying that this is our experience of the bay that my mother was in between the 16th December to the 5th January 2016. I have fished on Facebook for other peoples’ experiences and so far no-one has a bad word to say about the place. It seems to me that people who had specific problems like knee injuries are treated. Mum’s problems are global and they do not have the right approach to help people like her. She would have deteriorated and ended up in a nursing home, rather than back in her own home if it hadn’t been for my intervention and her own determination. 

 
“Well, welcome to our ward! We were expecting you yesterday, but you didn’t arrive! Did you get lost?”
Patient transport just hadn’t turned up at Kingston Hospital yesterday to transfer Mum to Tolworth rehabilitation unit, and so altogether Mum had spent 13 days in a hospital bed, and the chair next to it, with no diagnosis apart from that she needed rehabilitation. A previous X-ray some months ago had revealed a ‘probable’ crush fracture in the pelvis, but this time her X-rays were clear. No fracture.
There did not seem to be any reason to me why Mum should not be rehabilitated back to the state that she was in before her admittance, that is, able to live on her own, with her dog, with a lot of support from me and from a carer for a few hours a week. Mum could shower herself, dress herself, got to the loo, make a cup of tea, warm up a microwave meal, and let the dog in and out several times a day. She had an Age UK alarm which she could press if she fell, which sometimes happened. She is not depressed, has a nice home, a loving family and plenty of visitors, grandchildren and great children. She does quite a bit of exercise at home: she has hand weights, leg weights, a Pilates ring, stretch bands and pedals. She has a life very worth living.
I had heard good things about Tolworth Hospital, and had great expectations that she would get a thorough assessment, and a programme of physiotherapy which would help her get back home, maybe better than before. Mum has plans to get off the zimmer.
This is Tolworth Hospital’s entry in the NHS yourhealthcare.org

The Cedars Unit at Tolworth Hospital has 35 beds, providing nurse/therapy-led rehabilitation for adult patients in Kingston.
Patients are either admitted from home or from a local acute hospital, (such as Kingston Hospital) and include patients requiring stroke rehabilitation and those who require short term care such as intravenous fluids or medication, blood transfusion.
Patients are admitted who require rehabilitation, with an individual programme of care to enable them to fulfil their rehabilitation potential and independence. This includes the physical
, psychological and social aspects of rehabilitation with the ultimate aim of each patient returning to their own home.



Sounds good. At a council meeting a few months earlier I had heard a local doctor speak about the council’s plans to rehabilitate people like my mum. He made physiotherapy and rehabilitation for the elderly sound like a priority. At the time this was part of the alternative plan to the accommodation provided by Hobkirk House, a rehabilitation home which the council were closing because at 40, it was deemed too old.
The ward sister who took Mum’s history from me told me she was not normally on the ward, and gave me some advice. “You must make sure you speak up for your Mum.”.
Hmmm.
My heart had already sunk a little as I recognised one of the physiotherapists as being the community physio who visited mum at home at my request three times back in the summer. I thought a physiotherapist could help with mum’s back-ache, give her advice on exercises, and maybe work out what was going on with Mum’s gait, which was awkward and twisted. Her balance was poor.
I thought I knew what physiotherapists were. I thought they gave exercises, manual therapy, ultrasound treatment, massage. Here’s what it says in the Chartered Physiotherapists web-site.

Physiotherapy helps restore movement and function when someone is affected by injury, illness or disability.
Physiotherapists help people affected by injury, illness or disability through movement and exercise, manual therapy, education and advice. 
They maintain health for people of all ages, helping patients to manage pain and prevent disease.
The profession helps to encourage development and facilitate recovery, enabling people to stay in work while helping them to remain independent for as long as possible.

 
This physio had been very lacking in understanding when I phoned to postpone a visit, once because Mum wasn’t well, and the other time because she had had a recent fall and was shaken up. “Well you are being very unreliable. You’ve got one last chance. You are stopping me from seeing other elderly people who need my help.”. She came again, said she could do no more for Mum, and if I needed her again, to call…….She did give mum some exercises to do, and refused to change Mum’s zimmer frame. I had been convinced that the frame she had was too low and was giving her back ache. It was only when I phoned up some months later to say that mum’s osteopath said the frame was too low, that I was allowed to drive in to Tolworth hospital and choose a taller one from their racks of hundreds of zimmer frames. Mum’s back ache diminished as a result, in spite of, not because of, this particular physiotherapist.
But while the ward sister was taking Mum’s history from me, Mum was already involved in a chair based physio game where the patients were saying their name and doing some exercise. Wonderful, I thought. Some social and physical activity, just what mum needs.
That was the only time in nearly three weeks that she was there that this took place.
I thought it would be a couple of days before a proper assessment was made and a programme of exercise tailored for Mum was put into practice, so I was not surprised when not a lot happened for a few days. I was worried and had slightly lower expectations as it was coming up to Xmas. I had little hope of her getting out in time for Xmas.
At this stage Mum had gained weight in Kingston hospital, and could not stand up without considerable pain. She had had a catheter since the second day in Kingston Hospital, and consequently had little need to move. So she didn’t.
The wards are long, three bays being about 8 to 10 feet wide each. There is a tv at the end by the window. Mum was at the end by the nurses desk, and she couldn’t see the telly at all.

There was often a wait for the loo as there didn’t seem to be enough toilets, or showers for that matter. In those circumstances a urine catheter is a good idea.
But the wards are clean, and the food is very good. The nurses are nice.
Mum complained of not being able to sleep.
“It’s not noisy here Mum is it?”
it all seemed pretty quiet to me.
One evening I came in at about 7pm. A very nice young woman was dispensing hot drinks. She smiled at Mum. “Coffee, white, no sugar!”
“Yes.”, said Mum. “You know me now!”

“Mum, what are you doing drinking coffee at this time of night? No wonder you can’t sleep!”

“Well, they come round and give it to me!”

“Why are you giving people coffee in the evening? Do you drink coffee in the evening?”, I ask the pleasant young woman, who has stopped smiling and whose eyebrows are now knitting a bemused pattern across her forehead.

“No, I never drink coffee in the evening. I wouldn’t sleep…”

“So why?….??”

“Because this is my job.”.

“Well please don’t give this lady coffee at this time any more. I am sorry, but I do think it’s a silly thing to do.”

“Ok. Sorry.”

She went to give coffee to other people’s mums.

“What did you say that to her for. She was nice!”, said Mum.

“Well she is stopping you from sleeping.”

“Huh.”
She was waited on hand and foot of course: the staff were lovely and very solicitous that she should not fall. The hospital was like a little safe cocoon.
 
They have a wonderful contraption on the ward in Tolworth which helps the nurses push the patients from their beds to the toilet and back in great style. She found this quite amusing.
   

 They have a little gym in the unit. Mum was taken there once during her stay.
I visited every day. There was no physiotherapist around at the weekend, which was what I expected, but in the week, there were one or two on the ward, watching people walk along using their zimmer frames. Mum was still not up on her feet by her second week.
Every weekday I had asked the same question. “What physio did you get today Mum?”
And I got the same answer, from her, “Nothing. The physio came and tapped me on the shoulder and asked me to stand up, and when I stood up I was in pain, and he told me to sit down, and then he left me. That was it.”
I encouraged mum to stand up and sit down as much whenever she could, holding on to the hospital trolley for balance. Sometimes she was in more pain than at other times and could not do it.
By that second week I could see what was going on, which was nothing. Nothing like what the Chartered Physiotherapist website led me to expect. I was getting quite upset, and very worried for Mum’s future.
Muscles atrophy with rest. Circulation deteriorates. Mum’s ankles were puffing up, so they gave her more bed rest so that she could keep her feet up more, so that fluid would stop pooling in her ankles. She still had the catheter, even though I had asked at arrival whether this could be removed. I was told that Mum’s problems were far too serious to warrant the removal of the catheter. I insisted that they try, as Mum’s bladder although a bit unreliable, generally works ok. She is prone to retention at times, but after a while she can piss like a horse.
The lady in the middle bay opposite beckoned me over.
“What sort of a place is this?”she asked. “Do you know?”. At first I thought she was suffering from dementia, and didn’t know where she was, but this proved far from the case. She was very dissatisfied with her treatment, and she was arranging for her family to take her home and get her a private physiotherapist.
“You know dear, without help at our age, our bodies will just decline! I can’t just sit here and hope to get better! I have to get out of here. Or slowly but surely, I will die. I have been here for three weeks. Fortunately I have the money to pay for private care. Thank God.”
I was then summoned by the gentleman visitor to the bed opposite Mum’s.
“Do you know what’s going on here?”, he asked. A sadder story emerged. His partner had already been in Hospital for five weeks, having been taken into casualty after collapsing suddenly. There now seemed to be nothing wrong with her except a gradual physical deterioration. “Is she getting any physiotherapy here?” I asked, “No.” he said.
“They” were saying that she was going to be put into a nursing home at £5,000 a month, which amount would be drawn against their home. He could live in it till he died, but then the money would go to the state. Five weeks before, the couple were managing for themselves.
During the time Mum was there I saw that lady decline from being able to sit up to spending her days lying in bed. Mum was worried about her, but couldn’t talk to her because the wards were so wide.
“What is this, some sort of holding place for elderly people?”, he asked me.
“It’s supposed to be for rehabilitation.”, I said.
“Well there’s not much of that going on. And they won’t let me take her home. We are trapped here.I ‘ve been told she is safe here, but what’s the point of being safe if you are so miserable? This isn’t life, it’s existence. Jane can’t see the television, can’t talk to anyone. It’s awful.”
At the end of the ward, near the telly, there were two ladies who were in bed all day.
The lady right next to Mum was pretty self-sufficient, and pottered around, spending much of her time in the day room.
I said I wanted to see the Sister. “I am very worried about my Mum. The more she does nothing the more her body will get used to doing nothing and she will just deteriorate. I thought there was supposed to be some rehabilitation, some physiotherapy going on here! Look at all these people, just lying here, without any intervention!”
I was upset and hustled in to the sister’s office.
The sister said that Mum’s safety was paramount. That because she said she was in pain, the physiotherapist would not get her up and moving. Supposing she did get up and fell? Then that would put the safety of the staff at risk.
“But is that all you do here? Just watch people walk? What do you consider rehabilitation? I would have thought you could do something with my mum. Get her legs stronger, get her body ready to move again. The longer she just sits there, the less likely she is ever going to be able to walk again! She wants to be back in her own home, not spending the rest of her life being lifted about! You are supposed to be helping her to get back to how she was before, not supervising her decline. And no-one, not here or at Kingston Hospital has ever told us what is wrong with her!……….It it was you or me who arrived at A and E not able to weight bear, you would hope someone might be interested to find out why! “.
“Hmmm, said the Sister, and we discussed Mum’s case a bit more. The effects of over medication, the falls, the vertigo, the falls, the pain, no fracture….
“Well, she has Sacral Insufficiency then. She won’t ever get much better.”
“OH”.
I just have to pretty much ignore this news.
The head physio arrived. He listened to me too. “I see, well we could get some chair based exercises for your mum sorted out. I will get X to come by and give her something to do. She’s not on at the moment, she will come round tomorrow.”
“Please do! If she can’t stand she should still be having some form of rehabilitation to help her. She has arms and she has a spine she can use, which should be exercised. She should not just be sitting doing nothing. You must be able to do something for her.”. Tomorrow was the only afternoon I wasn’t visiting.
X never came. She was the physio who had been round the house. I didn’t expect much and she didn’t even meet my expectations.
But, I had spotted a few of these scattered around the ward.

    
 
Mum has a set at home, and uses them daily. “Could Mum not use a pair of those pedals?”, I asked the Head Physio.
Yes of course she could, no problem!
And so she was set up with a set of pedals that had been lying redundant so far as I could see, and she used them, and she stood up and sat down again for most of the day.
“For goodness sake Mum, if they come and ask you if you can stand up, don’t say you are in pain, or they will leave you to it. Just get up and get on with it.”.
Within a couple of days Mum was on her feet again, and the physios wheeled a wheelchair behind her as she walked up and down to the Xmas Tree at the end of the corridor. Arrangements were made for her discharge.
She could walk, so she was out. They also gave her a chance to go without the catheter, and there are no retention problems. The Sister, who was nice, said about Mum’s discharge plans, which were basically that I would move in with Mum for 6 weeks, that it was good to give her a chance of living in her own home.
I’ve just asked Mum about the staff. She said the nurses were very good, but how the physios got away with doing £@*k all, she didn’t know. They had a gym full of stuff that they didn’t use. And it was only because I looked out for her that she got the pedals, and mobilised herself out of there. Her opposite neighbour is still in there, desperate to leave.