The NHS needs a whole team – and that has to include administrators

On an afternoon last spring, in the chaos of trying to clear hospital beds for new patients, a frail, elderly man was rushed back to his house the moment that a care package was in place. Behind him, at the opposite end of the hospital, his wife of almost 57 years lay dying. The hospital staff didn’t have the time to be able to let him see her before ferrying him away.

That was my father and that was my mother. She passed away just five days later. I shall never forget the kindness of Winson, a young male nurse who, as I sat beside her bed watching over her breathless body, gently wiped a single tear from my cheek and who, equally gently, encouraged me to remove her earrings – something that I quickly understood was close to the services for our dead that have, so much, been sanitised from the UK’s mainstream culture.

It was the beginning of May. The blossom was falling in the garden that had been her domain. Whatever the reality said, the chaotic state of the National Health Service was not the headline news that it is right now, when even the prime minister has felt the need to apologise as countless non-urgent operations are cancelled, accident and emergency department waiting times rise and people lie on hospital beds in corridors.

Good sources tell me that St Helier, which lies in Carshalton, at London’s southern reaches, closed a ward recently in an attempt to save money – only to have to reopen it a short while later.

Indeed, my father had been one of the patients transferred into another ward in order to enable that closure, though I didn’t realise it at the time.

At the beginning of November, suffering serious abdominal pain in the night, he used his safety watch to summon help. A scan revealed gallstones and elective surgery was proposed, with the aim of building him up beforehand.

Then his major organs got stroppy. Early on a Monday morning, I was summoned to the hospital as a matter of urgency.

It’s approximately a two-hour trip. Scrambling out of the most convenient railway station and into a minicab, the phone rang again. They were prepping him for emergency surgery. I got there in time to sign the consent form and be told he would die without the operation – and probably with it. The anaesthetist then assured me that, since he would “be asleep,” there would be no trauma. She later told me that she had not expected him to survive the introduction of the anaesthesia.

His Methodist minister, the seriously wonderful Rosemary, was there too and we joked away with him until he was wheeled away. I was grateful that I had, for some reason, I had thought to put sunglasses in my bag.

Rosemary took me to the coffee shop and stayed with me. She didn’t try to be ‘religious’ to me’ but bought me sweet tea and let me burble away.

Ninety minutes later, the surgeon rang to say that Dad was back in the high dependency unit.

He’s a stubborn old sod.

The surgery had discovered nothing. They had expected to find that part of his bowel had died, but instead, realised that he had sepsis. Once stitched up, they started nuking him with antibiotics and, after hours of stabilising has blood pressure, the improvement increased. Within a day or so, he was off dialysis. After a week, he was fully conscious and able to start eating and drinking properly. It is possible that nobody has relished a Fortisip more – he asked for seconds and the look on the face of the nurse was priceless. She was as delighted as she was stunned.

Then Andrew, an Antipodean physiotherapist who walks around the place in shorts, noticed that his right arm wasn’t working. Lots of scans revealed he’d had a minor stroke – and also that he has a touch of vascular dementia. The stroke had only seriously affected his right shoulder and elbow – he can still grip and he still has feeling in his arm. His ability speak and swallow was unaffected.

Because of what the year had already been like, The Other Half and I had planned a short break in Vienna for a combination of culture vulturey and Christmas markets, and a raft of people (including medical staff) insisted I go. Out of medical danger, he asked me to bring him back a CD of Strauss. Johan II, that is. Richard might be more to my liking, but The Waltz King is Dad’s favourite.

While I was away, a team rallied around to make sure he had regular visits and I returned with a six-CD set of Strauss by the incomparable Vienna Philharmonic, conducted by Willi Boskovsky, plus a personal CD player and soft over-ear headphones so that he didn’t have to wait to go home to listen.

He lay in bed, air conducting.

The day I gave him these presents, I waited for over three hours to see a doctor. In the event, it was a physiotherapist who sat down with me to discuss the situation. Sure enough, Dad was going to need to have a bed downstairs at home, with a commode and other aids to help him. He would have lots of physio in the hospital before he went home, including being taught how to use some of these new aids, and then an intensive period of physio at home to help him adjust.

When occupational therapists visited his house to see the situation, they even told me that he would be taken into a kitchen before coming home to see how he could cope with, for instance, a toaster – would it be safe for him, given the dementia diagnosis? He was “top of the waiting list” to be transferred to the stroke ward and he would be home for Christmas.

They’d already told him all this too.

That was the last week of November. He never made it to the stroke ward. As far as I am aware, he made it to any kitchen either – and I have heard nothing to say whether or not he and a toaster are safe together.

He was discharged on 28 December. The 10 days beforehand had enjoyed all the tone of a Kafkaesque nightmare.

Having been told that he would ‘be home for Christmas’ he had focused so totally on that he was distraught.

He talked of throwing his Christmas dinner on the floor in protest at “The Bureaucrats” and how they were keeping him “In Prison”.

He has dementia, remember, and this just bolsters the conspiracy paranoia he’s enjoyed developing in recent years. Thanks, Daily Mail.

As quickly as possible, I had done a part-clearance on the house so that a bed could be brought downstairs – and here’s a chance to publicly thank Jacky from Carshalton Methodist Church for getting people around to do that shifting. I could not have done it on my own.

The process had revealed that my mother had been incapable of throwing anything away or of letting anyone help or move anything. There were empty biscuit tins under a dresser; a carrier bag of empty tablet bottles dating back to at least 2002 were stacked in a corner that was full of other carrier bags that were also stacked full of stuff. If any more floor space had been filled with bags, nobody would have been able to walk around the house at all. I spent my birthday up to my ankles in the mouse poop that was hiding beneath the endless, slowly-decaying bags, but it was done as quickly as I could get people to take away the furniture we needed to shift.

Then, just over a week before Christmas itself, a social worker rang me to see how things were going on. In conversation, it emerged that nobody from the hospital had bothered to contact social services about a care package and that she had simply rung up to get an update on the general situation.

Later that day, at the hospital, the occupational and physiotherapy teams panicked.

They told me that they couldn’t contact social services until all the new aids for him had been delivered to the house. But I had facilitated that at the earliest possible opportunity – and it still wouldn’t have been enough time.

They panicked.

They told me that care packages can be set up and put in place with 72 hours notice.

In an ideal world, perhaps – but not in the one that currently exists. As our own experience in April 2017 had shown and, indeed, as several people who work in the care industry have told me, this is not something that anyone would sensibly assume.

Two social workers have told me since that the 72 hours claim is nonsense and that even if a particular form can only be triggered by devices being delivered to a property, you talk to social services before that so that they can start the assessment process.

The occupational and physiotherapy teams continued to panic.

I’m afraid I got particularly ratty – I have been rather stressed of late, oddly enough – when a physio tried to blame nurses for not having sent a form to social services that they had (it was claimed) been told to send. A doctor told me that this was bollocks – that the form in question is sent by occupational therapy. A professional carer told me the same.

I managed a (surprisingly polite) sotto voce rant.

In the preceding weeks, Dad had been on wards where there was just a single nurse on duty at some points. He did not, from what I have been able to ascertain, receive therapy on a daily basis. He was shuffled between five different wards during his stay, including a final move on Christmas Day itself, when he was weeping and calling out to his dead wife that she should have taken him with her.

All those wards – yet not the stroke one we’d been told he was top of the waiting list for.

As I mentioned eaerlier, he got home just after Christmas. My niece had been down for the week to give me some respite, but she went home on New Year’s Eve.

In the early hours of New Year’s Day, trying to get from his bed to the commode, he fell and lay in his own shit for hours before a carer arrived. Fine whatever reason, his personal alarm didn’t trigger. He spent most of New Year’s Day in A&E before being sent home again.

The following day, he had home visits from two physios, plus a podiatrist. Everyone needed to go through chunks of his medical history each time for their own records. Thankfully, I was there, because he cannot remember everything or simply isn’t always aware of what would be relevant.

Today, he spent the day once more in A&E after a carer realised he was feeling rather poorly. He was dehydrated and probably has a viral infection.

Once again, the staff were fabulous.

Yet so stretched is the system that meals on wheels were not contacted, as they expect to be in such circumstances. They rang me direct concerned that he must have been taken to a different hospital.

There are recurring problems here.

One can ask why so much information has to be gathered so many different times. Is there really no central, complete record that can be accessed by any professional dealing with a patient?

Vast amounts of time are being wasted this way – and there is also the issue of someone such as my father not actually remembering all the correct answers, as happened the other day. If there was time, why not contact family – possibly by email – rather than ringing in the middle of a working day and expecting them to stop everything there and then?

It’s so chaotic that we have had one situation where the new ward he’d been moved to didn’t have any mention on his notes of the dementia diagnosis.

This, of course, requires administration – and we all know, because we have been repeatedly told, that there are too many ‘pen pushers’ in the health service and that they can easily be scrapped.

But that doesn’t make the paperwork go away. This is the paperwork – and if there’s no one to dedicatedly handle it, then it will either eat into the work time of medical staff … or get forgotten.

Communication falls into the same category. For instance, who contacts families to tell them a patient has been moved? In my experience over the past year – nobody.

Last April, when my father was in hospital following his heart attack, he was taken to another hospital for “a procedure”. Nobody told the family. We found out because my niece had come down from the north to visit him – and discovered that he wasn’t where he was supposed to be. I rang the hospital he’d been taken to, but every day for almost a week, I was told he was going to have the procedure that day and then be returned to the first hospital, only to later discover it had been put off until the following day. We could not organise visiting, because we had no idea where he was going to be at any given time.

This time around, Dad’s local pharmacy left a note at the house in November asking someone to contact them, since they hadn’t been able to deliver his medication.

I rang and, having explained the situation, was told that, when he was discharged, the hospital would let the pharmacy know about his medication so that they could organise and then deliver it. This was something else that slipped through the hospital’s net – and I was called by a physiotherapist and told that it was up to me to sort it out. The pharmacy were able to get the new prescription filled and then deliver it to the house – but they had not been notified as they should have been and had had to chase down his GP.

When Dad was admitted to hospital in November, I took a wallet in for him, with a little cash, a note of telephone numbers for close family, a few family snaps and a small prayer on a laminated card that had a tiny cross on it.

On his move to the high dependency unit, it got mislaid. I have asked about it several times – and been back to the original ward too, where details were noted down. I’ve heard nothing. But when staff hardly have the time to do their basic work – I have witnessed nurses almost running around to get key tasks done – how are they supposed to find the time to deal with things like this?

For the avoidance of any doubt: the staff I have dealt with and seen in action have been incredible – patient, caring and utterly committed to the task in front of them.

And my thanks not just to them, but also to the support team – so often forgotten. During his stay, it really helped my father when, for instance, whoever was on the tea trolley remembered him and how he liked his tea, and tried to make sure he got biscuits instead of cake.

Everyone knows the NHS is woefully understaffed and that it’s getting worse. But what I’ve attempted to do here is list here is a series of issues that relate not only to staffing levels – but also to administration.

Too many administrators in the NHS?

No. Not nearly enough.

And the idea that administration is somehow just meaningless ‘stuff’ that will disappear if there is nobody to do it is nothing other than a fantasy that is totally removed from reality.

I very much doubt that this is a unique set of circumstances that add to the difficulties currently facing the NHS. I do not, for one moment, think that what I’ve touched on here is unique to St Helier – and nor do I blame the hospital for what has happened, though it has been incredibly frustrating and has added to stress levels.

But that is why, rather than making a complaint to the hospital in question, I have decided that it is more important to put this in the public domain, where it can add to the swell of evidence on the current state of our health service and to the public debate about what sort of a health service we want and how we get that.

Please feel free to add any experiences of your own below and to pass this post on.

Time to care

Over on Facebook, someone started a very serious and sensible discussion about integration of health and social care services. Because of family events in the last six months, I now have personal experience of some of the issues, so replied at length.

But it struck me that what I have observed might help to inform a wider audience of some of the issues – a post here didn’t sound like a waste of time.

What follows is essentially my comments on the issue of integration of these services – based on my personal experience of the last six months. I think it’s clear why I have become drawn into the day-to-day reality of the situation.

This is most certainly not about condemning staff working in really difficult situations. Nor is about condemning any specific council or region, so I am not specifying those.

Indeed, I recommend reading the Ethical Care Charter – a document from trade union UNISON, which addresses a lot of what I have observed in the last half a year. Disclaimer – these days, I work for UNISON, but was not involved,ved in putting this document together, although I have reported since on councils signing up to it.

In the last six months, I’ve become a carer (one of several, in effect) for my father. I have power of attorney for his financial affairs (but not health) and increasingly – albeit erratically – adult social services in his area talk to me, since while my father is not ga-ga, he is increasingly divorced from a sort of gritty reality and certainly very forgetful.

The Start team from social services looked after him to begin with. He’d had a fall and a heart attack at the beginning of April, was released from hospital almost a month later and became a widower five days after that.

However, at the time, he said he had no ‘personal care’ needs – he could get himself up in the morning, dress etc and do the reverse in the evening. This impacted on what he was considered to need, within the parameters of some pretty strict rules that are based on funding.

I was asked (told) by adult social services to get a toaster so he could make his own breakfast. He’ll make himself toast occasionally, but it’s not guaranteed. I have attempted a form of bribery to get him to use it – the sort where you tell him that he can toast his own crumpets and slather as much butter on them as he wants, without my mother being censorious about him having “butter with bread”.

In the summer, social services decided he didn’t need them: he could have meals on wheels for lunch (with a sarnie in a bag delivered for his tea) and have visits from district nurses bookending the days to ensure he took his medication.

In the meantime, he has been going deaf, due to wax build up. The carers cannot apply unprescribed ear drops. The doctor hasn’t prescribed any. He had a GP visit him at home a couple of weeks ago – but not to do his ears, even though the GP themselves couldn’t get entry to the house because my dad can’t hear the doorbell at present. The GP had to ring someone to get the safe key code. Yet my father has now been ‘referred’ to some other ‘community practice’(?) to do his ears.

The district nurses couldn’t do that, and indeed, complained to an Age UK carer that he pays for, that his is not the sort of case to justify their £150-a-visit cost.

I had his head case worker on the phone a week or so ago saying that the district nurses had noticed that he is dehydrated. He doesn’t drink enough. Since then, she’s put two carers a day back on – and the district nurses have now disappeared into the mists of memory.

This is a classic case of people being bounced between budgets – between the NHS (district nurses) and local government (carers).

She told me the other day that she is confused by my father. She doesn’t want him to be so dependent, yet apparently cannot comprehend why he won’t get himself a drink.

Frankly, he’s not even eating much more than his breakfast (sometimes) and his meals on wheels lunch at present. I arrived at 10am on Tuesday: he hadn’t even had a drink, let alone anything else, since lunch on Monday. His first carer (who is wonderful) arrived just as I was making him tea and toast.

But I have realised that, for him, drinking is inherently social. Tea is a drink to share over a chat with someone. In the past (he’s a retired clergyman), he’d visit the local Catholic priest where they’d gossip over whisky; he was no stranger to the local pub (that was a down-to-earth social life away from the church); he spent his days in pastoral visiting (much of that to elderly women who would make him a cuppa or pour a cream sherry into a delicate little glass).

When I ask him if he wants a cuppa, his first response is to ask back if I’ll have one too.

The clues are there.

Time.

What carers need to really do their jobs, is time: time to chat, time for a cuppa. One of the biggest problems that the elderly face is loneliness. This is no secret: this isn’t rocket science.

They also need a properly-funded NHS that doesn’t palm off something like ear syringing so that a vulnerable, frail person cannot even hear the fire alarm for weeks.

They also do not need the piss-poor excuse that passes for tea from my Dad’s meals on wheels service. Every time I go, I find uneaten sandwiches (which we pay for, incidentally – it’s not free) in the fridge. And I cannot blame him – they look awful. Utterly unappetising.

Just as we feed hospital patients dross, because we have forgotten the connection between health, recovery etc and proper food (or have conveniently decided to forget it for the sake of cost) the elderly don’t lose their taste buds – but they do need to have them tickled.

On Tuesday, I heard a groan as he looked inside the paper bag that contained his ‘tea’. It was a meat paste sandwich – so unappetising that it would make supermarkets’ own-brand sarnies look like haute cuisine. I nipped back to the shops and bought a few things – ready-to-eat Cornish pasties and sausage rolls, cream cakes (I can guarantee those will never be left to moulder) and Cornish clotted cream and Golden Syrup.

Back in the house, I made ‘thunder and lightening’. It’s an old Cornish treat that I remember my (non-Cornish) mother making when anyone sent us a tub of clotted cream from the south west.

Take a couple of slices of plain white bread. Butter both. Add a sheen of syrup to one side and then spread clotted cream on top of that. Put the other slice of bread atop. Cut as needed. Eat.

My (Cornish) father didn’t remember having it before, but at the first taste, his face lit up. I have passed on the recipe to his Age UK carer, at his request.

Now, you can tell me ’til the cows come home that this is not ‘healthy’ – but between ‘Dad won’t eat’ and ‘Dad will eat’, which do you think is healthier?

So, in short: proper funding for all. Time is a serious time: time for carers to care, with proper recognition that actually, company is a genuine health issue for the elderly.

I can most certainly see advantages in services being linked – but it is far from the major problem that social care faces.

Why have we, as a society, apparently stopped seeing the bleedin’ obvious?

Cultural outings after a bit of a shock

It was a relief to see the back of June, a month that had not started with any sense that it would produce a major ‘event’, but took only a few days to announce that it was going to be memorable.

The event in question was The Other Half having a heart attack. Don’t panic – it sounds more dramatic than it actually was.

There was no clutching at chest and/or keeling over.

And the first responder, the London Ambulance Service paramedics, the medical, ward and support teams at Bart’s were all absolutely magnificent and have my (our) eternal gratitude and appreciation.

I've not personally seen the NHS in action like that, but it makes you very aware of just how valuable it is.

After four nights, he was discharged and is now doing rehab stuff, practising being a cat and feeling faintly embarrassed at having been signed off for two months, because he feels okay in himself.

If we both needed an urgent motive to quit smoking, that was it.

So, it’s all been a tad distracting – hence no posts on this blog for over a month.

Panorama from Queen's Promenade, Ramsey

And in the middle of it all, I had to fly out and back in a day to the Isle of Man for a family funeral – an experience that was more enjoyable than expected, but quite surreal at times.

It’s 40-plus years since I was on the island and, since I was so young then, I have limited memories of it. I had forgotten – or perhaps I had never fully realised – just how rural it is.

The taxi ride from the airport at the south of the island to Ramsey in the north took me over the mountains.

Fog was clinging to the bleak hills, which made one appreciate the dangers of the TT racers who had only recently been speeding along the narrow roads. There have been 243 deaths at TT and Manx Grand Prix races since they were first staged in 1911 – one this year.

'You has chips. We wants chips'

By late afternoon and my return journey, the cloud had lifted, leaving a view from the mountains down to the sea, which also serves to give one a sense of just how small an island it is.

Having arrived in the rain – stepping down onto the tarmac from the plane at Ronaldsway to the smell of manure – I found myself in Ramsey just as the drizzle tapered off. Wandering around in the damp, I recognised elements of the harbour, where my grandfather had taken me to buy fish fresh off the boats when we holidayed on the island.

I had chips for lunch – from a chippy where the menu board advertised “posh coffee” for £2 – and found myself feeding seagulls who had swooped in at the mere smell of chips. It was entirely apt, since my love of gulls stems from those childhood holidays in Ramsey, when I would wake to the sound of their shrieking.

Anyway, all of this means that you won’t be getting lengthy reviews for a number of things that we have seen since ‘The Event’ (as I feel like to euphemise it). As the medical staff made quite clear, rehabilitation does not mean enforced 24/7 bed rest.

Pirates of Penzance – left, Alex Weatherhill 

But I’ll start by mentioning the all-male Pirates of Penzance that we saw at Hackney Empire a couple of weeks ago.

We had booked not knowing that it was be an all-male production, simply that it was G&S, but it was an absolute hoot.

Particular mentions should go to Alex Weatherhill as Ruth and Alan Richardson as Mabel.

Watch out for future productions by Sasha Regan’s company – they’ve done similar productions before and hopefully will do so again.

It’s also worth noting that the Tate Britain’s Barbara Hepworth exhibition has opened.

Not helped by my inexperience in looking at abstract sculpture, I didn’t find it earth-shattering.

Which is not to say I didn’t enjoy it. The guarea pieces, carved from “great logs” have a beauty that seems to radiate something very tranquil.

Corinthos by Barbara Hepworth

Hepworth talked of ‘tunnelling’ through the wood and you can let yourself get lost in the curvaceous channels into and through it.

But in general, the exhibition really only surges into life at the end, with a room that aims to recreate a pavilion where some of her bronzes were displayed in the Netherlands half a century ago, and which the artist herself considered as a perfect way to show them.

Indeed, more generally, Hepworth commented on the link between a work and where it is displayed when she noted that “one of the functions of sculpture is to fulfil the demands and conditions of a given site”. The two should not be divorced if the culture is to fully work.

Suddenly, in this final room, you have the sense of what influenced Hepworth so much – nature: and how much better her pieces work in a setting that reflects that rather than a more sterile room.

Ham from the 'ultimate black pig'

And as if that wasn’t enough cultural hijinks, after a 16-year gap, we were finally lured back into the cinema last Friday.

I say “we”, but I’ve been the particularly reluctant cinema goer over the years; dischuffed with the actual experience of going to the cinema and also with the amount of Hollywood tat aimed at an adolescent male audience.

Don’t get me wrong, that audience deserves being catered for by the industry as much as any other, but not to the exclusion of others.

And with the UK having largely binned our own film industry and decided simply to import whatever Hollywood churns out, I felt disengaged from the entire enterprise.

Admittedly, I then ‘discovered’ foreign-language films – and a present of a DVD player allowed me to watch quite a few.

Where there is tapas, there are pardon peppers

While more recent years seems to have brought some improvements in what’s being made, I’ve waited for the DVDs rather than going to see them on cinema release.

Well, finally there was a film I didn’t want to wait any more months to see.

It has French origins and is the epitome of charm, sophistication and erudition.

I speak, of course, of Minions.

Having booked for the Vue at Islington, we needed to eat first, so tried La Farola a short walk away, where we enjoyed very pleasant tapas.

The Lomo iberico de bellota is apparently the “utimate black pig” and, seasoned with smoked paprika and sea salt, delicate slices are an absolute taste delight, with a good deal of complexity.

Green Gordal olives were huge and tasty; the padron peppers were fine (if not including any surprise hotties), while mushrooms were good too: the boquerones might have been Calabrian, but were a reminder of sunny Collioure, and the pan con tomate came on a scrummy, wafer-light, chargrilled bread.

Hurrah for silliness

Anyway, Minions was also our first 3D film – and that itself was rather enjoyable.

The film itself was great fun – utter silliness, but there’s a place for that. Some critics have been rather snooty about it, complaining that the plot is a bit thin.

It probably is, but it was not the sort of film where that bothered me. I didn’t want to see it for the ‘plot’, but for what it does very effectively, which in essence is a series of gags and sketches.

The opening – marvellously dryly narrated by the wonderful Geoffrey Rush – sees the eponymous yellow characters going through a number of bosses as they seek an evil being to serve.

Not only is that an establishing sequence in terms of giving us the minions’ history, it also establishes the sketch-like nature of the film.

No complaining from me – it provided plenty of laughs.

The initial smell of popcorn was almost overpowering when we entered the foyer, but the seating was as comfortable as anything I could remember.

So perhaps it won’t be another 16 years before I enter a cinema again. In fact, I think Ted 2 has just opened.