(When it comes to the ambulance service, though, there's a crisis of underfunding making the wait for one up to 23 hours! And that's clearly 100% unacceptable. So I'm excluding that service from the above statement. If you or a loved one need to get to the Emergency Department, it's -regrettably- necessary to find another way.)
Whilst it's true that non-chargeable in-the-moment care is generally there to save lives (once you've waited your turn in the waiting room for 7 to 15 hours!), there are some huge, huge problems.
I decided to write up my experiences with some tips, in the hopes it might help someone else in the future. If you just want the tips, please skip ahead to the 2nd half of this post (and good luck to you).
A close elderly relative received a late cancer diagnosis and sadly it's progressed very quickly. In the beginning treatment was offered for it. But -as mentioned- the cancer had been detected too late and the patient was quickly too poorly to be able to withstand the treatment.
The hospital delivering the oncology treatment initially was Royal Surrey County Hospital. (Anecdotally meant to be well-respected for their oncology department.)
For months RSCH failed to acknowledge that there were cognitive issues with their elderly patient meaning information about treatment, nutrition etc couldn't be absorbed or retained. But they adamantly refused to share any information with family (while being incredibly unsympathetic about the anxiety we were naturally experiencing.) I believe this directly contributed to the rapid decline of my relative's health, as they couldn't manage their treatment properly without help.
And actually, RSCH allowed an individual who shouldn't have been driving to continue getting behind the wheel of their car for months and driving the 45 minutes to their appointments & back!
Following a routine oncology appointment we learned our relative had been admitted as an in-patient, but not why. The following morning I called intending to enquire how they'd been overnight, and was informed they were -just that moment- being taken into surgery! The hospital were not going to bother to inform us. (It was for a pace-maker, which we gather is considered a minor procedure nowadays, but still...)
RSCH discharged this elderly person the day after the pace-maker surgery and it was an unsafe discharge. I spent a day and a half making phone calls to try to determine what ought to be done as I couldn't provide adequate or safe care on my own. (Eventually we had to spend 8 hours in the Emergency Department waiting room -at another hospital- for re-admission. Once I was finally able to convince the NHS it'd been an unsafe discharge, that is.)
A symptom of the cancer having metastasized to the bones was high calcium in the blood. This -it turns out- causes cognitive issues. That's right, the cancer itself was causing the cognitive issues which meant the patient couldn't successfully manage their treatment -- and still the RSCH oncology dept had refused to share information.
When RSCH did eventually communicate with family it was only to make unrealistic demands, such as blood tests to be organised within the next 24 hours. Due to geography and logistics, RSCH phlebotomy was out of the question for this. That left the local GP surgery, which usually has a lead time of 3 weeks for booking blood tests in! (Luckily, when I explained the circumstances the GP surgery were really helpful in that regard.)
Unfortunately, RSCH hospital and the GP surgery are in different counties, so despite being the same overarching organisation I had to -ludicrously- act routinely & repeatedly as go-between to get them to share the information with one another! (RSCH had to send me the list of bloods they wanted, which I had to pass on to the GP, then when the results were in I had to contact the GP surgery to get them to send the results to RSCH rather than the nearest hospital as they normally would. And that's the abridged version, without the minutia...)
The calcium issue kept reoccurring, so eventually I received a call from the GP advising that my relative needed to get to the Emergency Dept ASAP following the results of a blood test. (The elevated calcium can also cause heart failure.)
By this time, no-one in the family could drive or access a vehicle, so (having ruled out their taxi suggestion as being far, far too expensive for this pension-age patient!) they eventually offered to summon an ambulance. They said it'd be up to 2 hours.
It later turned out that the GP surgery didn't know what they were talking about, because 5 hours later, I called them back to find that no ambulance had been organised due to lack of availability.
A family friend instead had to leave work early, do a significant amount of driving around and bring my relative in to the hospital (this time Royal Hampshire County Hospital).
A further 7 hours in the Emergency Dept meant that my relative had been sat around with a heart that could've been on the verge of failing for 12 hours. (The panic attack I had that day was a significant one.)
This latter in-patient stay has been a lengthy one, and the calcium issue meant that my relative's mental capacity has only declined as time went on. The Lasting Power of Attorney for health and welfare which they'd donated turned out not to be worth the paper it was printed on, though. Because the hospital deemed it that providing the patient could say their name, date of birth and that they were in hospital, they had mental capacity. And therefore, having capacity, they could make their own decisions & only the bare minimum of information need be shared with family.
But worse than this, the hospital didn't seem to want to accept information from family, either. For the longest time they kept referring to the patient by their last name because it appeared to have been written down the wrong way around on their forms. I kept pointing this out, but no-one corrected it and they continued to call them by their last name (meaning that their patient wouldn't answer their questions, because they didn't realise it was them being addressed).
We pointed out over and over that the patient refuses to drink the tap water, and that this was why we were bringing in supplies of bottled water. But they kept putting the bottled water out of reach on the cupboard behind the bed, and then moaning at the patient for not drinking the jug of tap water.
I guess those things are annoyances, though, but more critically, when the hospital agreed to do anything in relation to the patient's care or treatment, it'd take them weeks to organise it. It's transpired that my relative actually only had months left to live, and weeks & weeks of it have been spent in unnecessary suffering because of bureaucracy and inefficiency.
For example, while receiving treatment for the cancer, drug interactions meant that existing arthritis pain relief could no longer be continued. But it was weeks if not months before any alternative pain relief was finally agreed (paracetamol -- I could've picked it up in the supermarket and taken it in, for goodness sake, except that's not allowed!).
We ultimately provided the Lasting Power of Attorney document at least 5 times (3 electronically and twice in hard copy). They kept denying that they had a copy on their records, despite it being sat in someone's email inbox (and at least one of those folk had replied to acknowledge receipt). The hospital is still disregarding the document anyway, though, despite the patient no longer knowing what a cup is or that they need to open their lips in order to consume a spoonful of soup! (Bless them.)
Oh, and given that the patient can no longer consume any sustenance independently, you'd think that there'd be some sort of support offered to manage their nutritional needs? Nope. Food & drink are simply placed on the table where the patient can neither reach them nor manage to manipulate them and then later removed again, unconsumed.
***
Tips for 'navigating' the NHS
- Responsiveness varies -- my GP surgery takes at least 2-3 days to even look at an e-consult, nevermind respond to it, whereas my relative's surgery often responds the same day (though not always);
- Be prepared to repeat yourself, many times. I think my 'record' was 6 (5 in the Emergency dept, and then again on the ward the following day because the information hadn't been transferred to the ward!);
- Don't believe what they tell you -- if a specialist tells you that they'll write to your primary care provider, for example, don't just assume that it'll happen in a timely fashion; they should cc the letter to you, so if you've not received it in a week or two, chase (because otherwise it could easily be four to six weeks).
If a GP tells you it'll be up to 2 hours for an ambulance, it won't be. If they tell you they'll call ahead to the Emergency dept to make them aware of the expected arrival of the patient, it doesn't make any difference, there's still an hours long wait in the waiting room regardless;
- Write stuff up on your phone or computer and be prepared to print off numerous copies & keep handing them in every time there's a shift change, almost; if you say it verbally to a nurse or staff member, it won't make it onto the patient's records (even if you're a close enough relative to be allowed to have discussions with the staff to begin with). (You could try asking if there's someone who can act as an email point of contact, but this didn't work for me.)
Consider affixing a copy of the print-out to the whiteboard above your loved one's bed. (I've not actually tried this, so I don't know if it'd be allowed -- or if anyone would actually even look at it.)
- Make a nuisance of yourself (politely) -- refer to "Don't believe what they tell you", above. If you're content to simply wait, then you'll be waiting a long time. (This tip won't make any difference whatsoever in the Emergency Dept waiting room, however; not unless someone's extremely elderly and at a very high risk of a seriously detrimental outcome.)
- Only 1 next of kin can be designated which -from a relative's perspective- can make things difficult if, say, one of you works nights and isn't available to make/place calls at the relevant times. (The NHS has their own rules about who this should be -- for example, it's the eldest child if the patient has numerous adult offspring (and there's no spouse in the picture). Have the patient ask about the process if they think they might want to deviate from the predetermined rules, like -say- having their younger child or even a niece/nephew as NoK, for example.)
- Crucially, Lasting Power of Attorney for Health & Welfare is not a magic bullet -- what you want to do is write out an Advance Decision either instead or as well; for example, after my experience, it's my intention to prepare an Advance Decision indicating that information may be shared on request not only with each of my immediate blood family but also with my chosen family, i.e. a set of specific close friends.
From recent experience, it will probably then be necessary to make arrangements for the Advance Decision to be handed over -likely multiple times- if in an in-patient setting. If it's only shared with the primary care provider it'll simply sit on their records (at best) and do absolutely nothing for you (or, at worst, it possibly won't make it onto your records at all).
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