First of all, Aelfthryth, in case you were wondering, was the mother of Aethelread the Unready, the historical figure whose name I’ve stolen as my blogging alter-ego. Since this post is going to be about my mum’s experiences in the last few years of her life, I’ve decided to use Aelfthryth as her pseudonym. I realise I may come to regret this when I have to keep stopping to check how you spell Aelfthryth. (Oh, and no, I really don’t know how you’re supposed to pronounce it – it seems to have way too many consonants in it – but El-frith (possibly Ale-frith) would be my best guess.)
There are really three reasons why I’m writing this post. One is that this is the season of the first anniversary of my mum’s death, and it’s a way of acknowledging that occasion. The second is that the treatment and care of the elderly is something of a hot-button topic at the moment, and this is a way of sticking an oar into the debate. The third is that it’s becoming increasingly common to hear that NHS and other staff involved in the care of the elderly are either cruel or incompetent, and wouldn’t know how to treat someone with dignity and compassion if their lives depended on it. I want to think about how much of all of that was reflected in my mum’s experiences of the various elderly care services.
This is actually my second attempt at writing this post – the first turned into a 6,000 word epic – so please bear in mind that, if it reads like it’s been edited to buggery, it’s because it has, in fact, been edited to buggery. (And yes i do realise it’s still far too long.) I’ve decided to do the bulk of this post under a sequence of different headings: social services; social care (daily personal care); convalescent care; primary care (GPs and District Nurses, including out-of-hours services); hospital out-patient treatment; and hospital in-patient treatment. I’ll try to make them not sound too much like bullet points.
The first social worker assigned to Aelfthryth was an unmitigated disaster. She began the first meeting, without even introducing herself, by telling Aelfthryth that she had until the end of the week to decide which old people’s home she wanted to move into. It subsequently emerged that the social worker had confused Aelfthryth with an existing client on the same ward, and had held an entire meeting with her on that basis. This meeting was obviously traumatic for Aelfthryth, but the bigger concern is the violation of the confidentiality of the client who the social worker thought she was meeting. Details of the precise nature of the other client’s medical problems were discussed, and all of Aelfthryth’s objections that she didn’t have these problems were overruled, with the social worker saying that Aelfthryth must be ‘confused’, and that ‘medical records don’t lie’.
Fortunately, Aelfthryth never saw that particular social worker again. The replacement was better, and arranged a care package that enabled her to return home. She also helped Aelfthryth with an application for Attendance Allowance, which was of some help in meeting the costs of the care package. (Aelfthryth was one of the many elderly people whose really quite small savings put her in the bracket of having to pay for care, despite the fact her actual income was tiny, but who also point-blank refused to use ‘rainy day’ money to meet ongoing bills.)
Aelfthryth felt that most social work staff were professional, but not friendly, and more interested in ticking boxes on forms than they were actually listening or helping. The outcomes of needs assessments also frequently seemed fairly bizarre. For example, following one hospital admission Aelfthryth was assessed as requiring a walking frame, despite the fact at this stage she had been using a wheelchair (provided on the recommendation of social services) for more than a year, and her mobility had become worse in the interim. Aelfthryth was convinced the walking frame was only supplied because the social worker accidentally ticked the wrong box on a form.
Overall, the service was, I guess, adequate, but I do wonder what would have happened if Aelfthryth had not had close relations to speak up on her behalf – social services seemed always to have to be chased.
Over the course of the five or so years that Aelfthryth required personal care, two separate teams were involved. The second of these was arranged free of charge by the local hospice, and provided an enhanced level of care at home once Aelfthryth had become seriously unwell, but before she required 24 hour nursing care. The service provided by this team was truly excellent, and the fact that they could be relied upon to turn up when they should, and do what they should, every day, without fail, was a great reassurance both to Aelfthryth and to us, her family.
Prior to this, care had been provided by a private company that was employed by social services to provide social care to elderly and vulnerable people living in the area. There were some things that this company definitely got right. For example, they tended to employ very local people, which meant that the clients and carers had a lot in common. They were able to talk about prominent local people, and local landmarks, and so on, and this went a long way to offsetting feelings of isolation for people who were housebound. For the most part, the carers employed were genuinely caring as well – on several occasions when she was feeling particularly unwell, Aelfthryth’s main carer would pop in during the day, even though she was not paid to, to check how she was doing.
There were also downsides, however. Staff tended not to be well-trained. The company made much in its brochure of the fact that all their carers either had or were working towards a recognised qualification, but it quickly became apparent that almost all the staff fell into the ‘working towards’ category, and that most would leave for other jobs as soon as they had their qualification. The main reason for this is that the carers were paid minimum wage. This was despite the fact that those who, like Aelfthryth, had to pay for their care were shelling out a very much larger hourly rate for the care they were receiving. To say this discrepancy annoyed Aelfthryth would be putting it mildly.
In addition to not paying their staff properly, the company also failed to employ enough of them. This meant that the staff were almost always running late (sometimes several hours late) and that they were in a terrible rush. It wasn’t uncommon for this to result in Aelfthryth receiving 10 or 15 minutes of care per session, despite the fact that she had been assessed as needing (and was paying for) 30 minutes per session. This often led to oversights. For example, Aelfthryth would find that the carer had taken through a bottle of water for her to drink, but had forgotten to loosen the cap, meaning that she couldn’t open it. Or alternatively Aelfthryth would find that the carer had forgotten to switch the kettle on, and so had left her with a thermos of cold water with which to make coffee and instant soup throughout the day.
For the most part, these were annoyances rather than anything more serious – Aelfthryth could, with some difficulty, manage to do most things for herself, and in some respects even enjoyed the challenge of having to do them. She also had a number of good friends and family members living nearby (although not her son Aethelread…) who she could call on to come and help her if she had to. But for those who were more dependent on the services provided by the carers, dehydration and malnutrition could have been a serious danger. (Of course, carers may have taken more trouble with those of their clients who were more obviously helpless.)
On balance, I would have to say that, despite such problems, this experience was broadly positive for Aelfthryth. The service was extremely expensive, and represented very bad value for money, but it succeeded because it was a human service provided by people who actually cared. In many ways it was the regular human contact that Aelfthryth needed more than the practical assistance, and the individuals employed by the company were, for the most part, very good at providing this. That said, the company itself was appalling, and exploited both its clients and its employees. I’m not a religious person, and I don’t believe in hell, but natural justice demands there ought to be some kind of punishment for people who feel comfortable making such lavish profits doing so very little for the weak and helpless people who depend on them.
This is the only real out-and-out horror story in Aelfthryth’s experiences. The first time she had been in hospital for a really serious operation, it was decided that she was no longer ill enough to be in hospital, but was still too weak to return home. She spent a fortnight in a local-authority funded ‘halfway house’.
The building was run-down, and the staff (most of whom were temporary or agency staff) were demoralised. Over the fortnight she was there, several residents suffered injuries serious enough for them to have to be re-admitted to hospital. Over the same 14 day period, there was an outbreak of scabies. Residents who needed help getting to the toilet were regularly ignored, leaving them with the option of soiling themselves while sitting in the day room in front of other residents, or trying to make it to the toilet on their own. Some members of staff were bullying and aggressive to residents; some didn’t even try to hide it in front of visitors.
On one occasion when I was visiting, I witnessed a panicked reaction by staff when they realised they had given the wrong medication to a resident, and overheard them agreeing, if necessary, to back each other up in saying that two residents had swapped id bracelets. Another time I listened to a resident literally screaming in agony as the staff attempted to lift her out of bed with a powered hoist. The resident’s daughter was present, and tried to insist that the staff called a doctor. When they refused, she called an ambulance instead. On getting to hospital it was discovered that the resident had broken her hip during an earlier fall in the convalescent home. (I know this because the resident’s daughter came back the next day to collect her mother’s belongings, and I spoke to her while we were both waiting at the bus stop.)
A few weeks after Aelfthryth’s stay, and following an inspection, the place was summarily shut down.
For the most part, care here was truly excellent. Aelfthryth, who usually had at least one surgical wound that required dressing, had regular contact with the district nurses, and got on well with them. She was always amused by the way the district nurses would criticise the dressing techniques used by the hospital nurses, and vice versa, but the two teams actually liaised very effectively in providing care. The district nurses also liaised very effectively with the local GPs, with messages between the two (for example, for a doctor to attend to see if a wound was infected, and whether antibiotics were required) always passed on promptly.
The in-hours service provided by the GPs was also excellent. In particular, the GP she thought of as ‘hers’ was in some ways as much of a friend as he was a doctor, and was of enormous help to her after she had been told (very brusquely) by a hospital consultant that she was now a lost cause. (The exact wording the consultant used was ‘You should now consider yourself terminally ill.’)
Because Aelfthryth was housebound, the GPs always had to come out to her. Contrary to popular rumour, the reception staff at the practice were always happy to arrange this, and Aelfthryth was even able to say whether the matter was urgent (in which case the first available GP would attend), or, it wasn’t, she was able to request a visit from a specific doctor. If a prescription was necessary, the GP would usually offer to drop it in to the local pharmacy on the way back to the surgery ready for someone to pick it up later in the day. On one occasion, when the GP thought it was a good idea for Aelfthryth to start on a particular medication straight away, he took the prescription to the pharmacy, waited for it to be filled, and brought it back round to her.
Out-of-hours services were poor. Aelfthryth only had to make use of OOH services on two occasions. Each time, when a regular GP from the practice followed up the next working day (something they seemed to do automatically), the diagnosis or recommended treatment was changed. On the worst occasion, the OOH GP attended on a Saturday afternoon, spent most of the duration of his visit lecturing Aelfthryth on the fact that the NHS really couldn’t afford the ‘luxury’ of home visits anymore, took a cursory glance at her shoulder, advised that it was definitely nothing serious, and that he absolutely would not prescribe anything for the pain. The following Monday her regular GP attended, assessed her shoulder, and arranged on the spot for an ambulance to take her to hospital. Once there, she was diagnosed with multiple fractures, was given morphine for the pain, and had to undergo a five hour operation to repair the damage to her shoulder. It was never clear to me if the damage had become worse because of the delay in treatment, but I am certain that she suffered a couple of days of unnecessary pain.
Hospital out-patient care
The main bugbear here was actually getting into hospital to attend the clinic, as hospital transport was a nightmare. Once Aelfthryth had been officially accepted as a person requiring hospital transport (and this in itself was a major thing to arrange, with the signatures of a consultant, GP and social worker all required), transport was supposed to be automatically arranged at the same time as an appointment was made. In reality, this never happened, and patients were advised to phone the patient transport office to ‘double-check’. On one occasion, Aelfthryth phoned a fortnight before an appointment to check that transport had been arranged, and was scolded by the administrator for phoning too soon. She called back a week later, and was scolded for leaving it too late. The people who actually drove the patient transport ambulances (who were always unfailingly lovely) were mystified as to why this was, since their schedules were never drawn up until, at the earliest, the day before.
Once actually in the clinic, things usually went well. For the most part, it ran to time, and as a ‘frequent flyer’ Aelfthryth became well-known to the nursing staff at the clinic, who would usually make her a cup of coffee, and even sometimes offer her a slice of homemade cake, while she was waiting. After a passing manager noticed this, and issued instructions for it to stop (on the grounds that another patient might object to not receiving this ‘special treatment’), the nurses took to wheeling Aelfthryth into the linen store before they brought them to her. As the senior nurse put it, ‘No manager’s ever going to set foot in here’. Aelfthryth’s only real objection to the treatment she received in the clinic was that she saw a different doctor each time she went, and ended up explaining the same things over and over again.
Hospital in-patient care
This again was mixed. For the most part care was good or excellent and, contrary to what is usually thought to be true about the NHS, seemed to improve over the period of time that Aelfthryth was receiving treatment.
In the initial stages of Aelfthryth’s treatment, a centralised process of assigning nurses to different wards on a daily basis seemed to cause significant staffing problems, with ‘too many’ nurses being assigned to some wards and far too few to others. Another consequence of the system was that, even if someone was in hospital for several days, it was exceptionally rare for them to see the same nurse twice. This was a bad thing for patients, because it reduced almost to zero any sense of continuity of care.
This approach also seemed to lead to a situation in which nurses were unaware of fairly critical information. For example, one nurse tried to persuade Aelfthryth to get out of bed and use a commode, even though she was at the time under strict instructions not to move, for fear of disturbing a large skin graft. It was worrying to realise that, had Aelfthryth had problems with mental confusion (or if she had just been the kind of person who automatically assumes that ‘nurse knows best’), the nurse’s ignorance could have led to significant complications in Aelfthryth’s treatment.
Luckily, this problem was resolved part way through Aelfthryth’s experiences of going into hospital. Under the new system, nurses were permanently assigned to specific wards. On occasion, of course, nurses would have to be sent elsewhere in the hospital to cover shortages, but there were always some familiar faces on duty, and this went a huge way to improving the sense of continuity of care. It is hard to describe how much difference it made to Aelfthryth, after an uncomfortable and sleepless night, to be greeted by a friendly and familiar face, especially if it belonged to someone she remembered from a previous stay.
The only persistent problem Aelfthryth encountered with nursing care was that nurses would frequently come along and ‘tidy up’, and this usually resulted in items she wanted or needed access to being put out of her reach. On one occasion when I was visiting a nurse came and poured out some water for Aelfthryth, and gave a brisk and friendly lecture on the importance of avoiding dehydration. After she had left Aelfthryth pointed out that the cup had been left just tantalisingly beyond her reach. This was a fairly common problem on the ward – it wasn’t unusual for younger and more mobile patients (or sometimes visitors) to pass items to patients who couldn’t reach them. On more than one occasion I found myself wondering how much of the spread of infections like MRSA could be traced back to this problem.
Surgical care was usually good, with one notable exception. As a result of an adverse reaction to a childhood vaccination, Aelfthryth had badly impaired lung function. This, together with her age, and the sheer number of surgeries she required, meant that it was considered very high risk to administer a general anaesthetic. Anaesthetists were understandably keen to avoid the risk, and wanted to use local or regional anaesthesia wherever possible. Surgeons, on the other hand, displayed a marked preference for Aelfthryth to be unconscious throughout the various procedures. It wasn’t uncommon for Aelfthryth to become aware of this disagreement, and on one particularly bad occasion she was actually able to overhear the surgeon and anaesthetist shouting at each other in an adjoining room. This endlessly repeated disagreement significantly increased Aelfthryth’s anxiety in the run-up to every operation – she was acutely aware that the issue under discussion was the likelihood of her living though the operation – and more could and should have been done to shield her from it.
Based on Aelfthryth’s experiences, it would seem as though problems and difficulties in the NHS and elderly care system are being over-emphasised by some people. In some cases this is down to simple politics and/ or economics. It shouldn’t come as a surprise that, when Labour are in power, Conservative supporters seek to portray public services as being in a state of crisis, and vice versa. Neither should it come as a surprise that newspapers with an aging readership try to boost sales by publishing sensationalised stories on matters of concern to the elderly population.
The truth is that I’ve been reading scare stories about the imminent demise of the NHS for the whole of my adult life, and looking at them altogether, the remarkable thing about them has been that they’ve all been wrong. The internal market didn’t destroy the NHS, like a lot of people said it would. Fund-holding by GPs didn’t destroy the NHS, like a lot of people said it would. PPP projects to fund new hospitals haven’t destroyed the NHS (though they have made it more expensive than it needs to be). I have an enormous amount of respect and admiration for the Jobbing Doctor – he’s one of my all-time favourite bloggers, and it’s clear that he’s absolutely sincere in what he writes – but I’m afraid I can’t endorse his view that current and proposed changes to primary care will bring about the destruction of the NHS, either.
There was an illiterate advertising campaign for Zurich Insurance a while ago that went under the slogan ‘Because change happenZ’. It’s a stupid slogan, but it captures something significant. Change, whether we like it or not, is inevitable. And also, whether we like it or not, all of us are ‘programmed’ to think that every change made before we came along was part of a gradual process of improvement, and that every change that’s been made after we’ve been around (unless, of course, we made it ourselves) has been part of a slow process of decay. As far as I can see, that’s just not the way change works. Change isn’t really about things improving or decaying, it’s just about things changing. In a philosophical sense, I’d argue that most change is neutral, and that seems to be backed up by what’s happened in the NHS. Each of the much-celebrated and much-dreaded changes haven’t, by and large, improved or destroyed the NHS – they’ve just changed it.
That’s not to say I think the Jobbing Doctor and others are necessarily misguided or wrong in what they say, but I do think that Aelfthryth’s experiences towards the end of her life prove that things aren’t as black and white as they’re sometimes portrayed. By and large, when things in Aelfthryth’s treatment and care changed, they changed for the better.
Taking a longer-term view, Aelfthryth herself always used to talk about how much things had improved over the course of her life, and it seems to me that she had a point. She was born soon after a global financial crisis fairly similar to the one we’re experiencing now had led to people in Britain literally starving which, no matter how bad things get, will not be repeated this time around. She used to do her homework in a Morrison Shelter, listening to the sounds of enemy aircraft flying overhead. As a child, she suffered from very poor health, but her parents usually couldn’t afford to pay for a doctor, or even always for enough fuel to drive the damp out of their house. Her parents weren’t especially poor – her father had a thoroughly respectable office job – but that (and worse) was just what life was like for most people at the time.
In contrast, Aelfthryth ended her life looked after by a welfare and healthcare system that gave her access to a doctor or a nurse whenever she needed it. It paid for her operations, and her aftercare, and her medicines. It arranged for people to help her with washing and dressing, and cooking and cleaning. Almost without exception, wherever she went she was met with caring and kind and compassionate people who uncomplainingly put themselves to trouble to ease her discomfort or distress.
No, her experiences weren’t perfect. If you’d asked either her or me at any point while we were actually going through it, we could probably have given you a list of complaints as long as your arm, but, truth be told, most of them would have been very minor. It’s always easy to complain, and there is no system ever designed that doesn’t fall short of perfection.
The NHS and social care sector are chronically under-funded, and they rely too much on the good-will and hard work of the underpaid and underappreciated people who work within them. The NHS, especially, seems to be in an almost constant state of siege. One week it’s criticised for being too piecemeal and uncoordinated, the next for being too centralised and bureaucratic. It’s the undeserving whipping-boy of every hack journalist or self-serving politician with a career to advance. It’s undermined from within by endless, bitter feuds between people who actually share the same goals and ambitions, if they’d only stop rant-blogging for long enough to notice. Its long-term future is attacked by professional pessimists on the left who say that it’s too expensive to ever be sustained, and by over-confident optimists on the right who say that a free market and private insurance will magically conjure solutions from problems.
But, despite all that, the system actually works, more or less. Aelfthryth’s experiences prove that it does, and I really don’t think that she was unique or special. The hospital that treated her was middle-ranked for pretty much everything in inspections. On the one hand, I’ve read internet posts describing it as a stinking, filth-strewn hellhole, staffed by viciously cruel megalomaniacs whose only aim in life is to humiliate and painfully kill the patients entrusted to their care. On the other, I’ve leafed through the hospital’s official brochure, and wondered why, if everything’s as perfect as they claim, they chose to use ‘artistic’ watercolours rather than photographs to illustrate it.
I really do worry that, in amongst all the sound and fury of the various debates about the NHS and social care system, we’re in serious danger of losing sight of the most fundamental facts. The system is there, and it pretty much works. It’s not permanently teetering on the brink of a precipice, and neither is it in perfect, unassailable health. It’s just muddling along as best as it can somewhere in the middle. And all of us, whether we work for it, or make use of its services, or both, really should be grateful for that.
And now: The Comments, in which I expect to be repeatedly told how wrong I am, by all sides in the debate…