I'm going to start this post by saying that I have the utmost respect for NHS workers in the current crisis. I feel for every one of them. I have HCPs amongst my family and friends, and in no way is the following a criticism of the frontline health workers. This is more about how much they are being undermined by the system they work within and how sad I am about that - and angry.
I have posted a few times about my Mum who has end stage ovarian cancer and is in her last short months. She is now housebound, getting tireder and weaker by the day, and although technically because she is in a high risk group, I shouldn't be visiting her, I am her carer and have to go on a daily basis for at least a couple of hours to help her maintain herself - shopping, prescriptions, housework and the like. Her digestive system is shot, chemo has killed her tastebuds, everything she eats tastes sweet and makes her nauseous - alot of time is spent trying to fid things she can stomach. She is on a palliative care regime but not hospice ready yet. She wants to pass at home if possible. I am of course doing everything recommended in the shielding advice because her death will be harrowing without an added helping of CV19.
A week ago she had a drain fitted during a ten hour trip to the hospital and had around 10 litres of fluid drained that day - Community Nurses come every other day to do the drain, fluid production seems to be slowing and the oedema which had spread down into her legs has improved. So far so good.
Over the last few weeks, she has had persistent bouts of diaorrhea, a new thing after months of morphine induced constipation. She rang the macmillan nurses who advised she contact her GP. After a phone appointment, the GP wanted to make sure it wasn't an infection so it was arranged that I go to the surgery to pick up sample pots to be returned the next day. This was at the end of last week when one was still allowed inside the Medical Centre.
The receptionists were behind a metal gate, all wearing masks (as I do now routinely) and were somewhat put out that I was talking to them, despite being advised to make the trip. I was given the pots, and told to bring them back the next day to be labelled and sent off before 1pm the next day.
The next day, I believe it was Friday, I took the samples back - I was asked why I hadn't labelled them and explained I'd been told that would be done with bar codes, and gave them my Mum's details. The Community nurses had looked at swelling and redness on my Mum's foot, which may be cellulitis and require antibiotics. We were advised to ask the GP to ring her - she's on a special list for telephone appointments as she is housebound. When I started to ask for this, I was told abruptly I would have to go home and ring in to ask for the telephone appointment, but I explained politely that it had been advised it was urgent, so with some reluctance, they agreed to arrange the telephone appointment. By the time I got home, my Mum was on the phone to the GP - so far so good. A prescription was agreed and collected when it came through.
On Monday, my Mum had a call from the surgery to say that due to a labelling error, her samples hadn't been sent, so the process needed to be repeated. In addition, because fentanyl had been administered during her drain fitting appointment at the hospital with much more immediate effect than the morphine she is on which takes at least an hour to kick in, and which gives her pain inducing constipation on top of her other issues, it was agreed at the end of last week with the Macmillan Nurses that they would send a prescription through to the GP for patches that would be better.
I went back to the surgery yesterday to pick up the test pots for a second attempt. Now one has to ring from the car park, and receptionists have to come out. I was quizzed as to why i was requesting more pots as I'd already had some. I explained about the error, and was given the test pots. I had been advised by the Macmillan Nurses to ask about the patch prescription - it seems that because it is a highly controlled drug, the prescriptions can only be issued on paper and are exempt from electronic pharmacy symptoms, and although they had been sent by the macmillan nurses they were waiting on a GP sign off. fair enough, but this wasn't explained so we had been checking with Boots in vain. I duly returned home so my Mum could ring up and sort this out.
My Mum arranged with whichever receptionist who answered the phone that I would pick up the paper prescriptions which include other palliative medication that might be needed to treat her at home by community nurses, when I dropped off the samples today, because the pharmacy attached to the surgery had none in stock and I would need to go to Boots in person. Fair enough.
When I arrived to my Mum's this morning, she was virtually in tears. My Mum is very stoic - getting her to ask for help is like pulling teeth. When she did her samples, they were black, which can be a sign of internal bleeding. She rang the surgery to ask if when I dropped off the samples, a GP could just glance at them and advise whether she should keep taking blood thinners she is on which might exacerbate any problem. The receptionist she spoke to was utterly dismissive - the GPs cannot be taken from their important work, there was no record of these tests being needed - essentially, pardon the pun, the implication was that we were doing all this for shits and giggles. Eventually, the receptionist begrudgingly agreed to a GP call back.
I took the samples up to the surgery, rang in, was asked who had ordered the tests again, she eventually came out, asked very rudely what sort of sample it was, who had authorised it and why, asked if they were correctly labelled - this time I had put her name and DOB on to be sure, and I said I was told that bar codes would need to be added. Her attitude was thoroughly dismissive. I then started to ask for the paper prescriptions that had been organised for collection today and before i could finish the sentence she rudely said I would have to go home and ring in about that. I'm sorry to say that at that point I raised my voice. I said very firmly -NO - and explained again the situation. She stormed off in a huff saying she didn't know about that, she'd have to ask someone. Very quickly, the named member of the prescription team came out with them as promised and was very lovely.
I went down to my Mum's Boots where most of her prescriptions go, a big central one, to discover they didn't have it in stock, I would have to try other pharmacies. They were as helpful as they could be and told me the branch half an hour away had them - they couldn't be sent over as the prescriptions have to be seen in person - I obviously did that trip. And now we have everything we need this week, hopefully.
This is after the debacle of trying to arrange hospital transport which took phoning four different NHS agencies because numbers have been changed and no department seems to speak to each other, and the saga of trying to get hold of Pleurex bottles for drainage at home because no-one was sure who should be providing them. Resolved now, but it took about six phone calls and much going round in circles to sort out.
I am now so concerned for anyone with a serious health condition who needs ongoing support, particularly end of life care - it seems to be such a shambles. Like many others I am doing my best to do the social care and emotional support, and anything else I can do to help relieve pressure on the NHS right now, but I'm not able to do any of the medical stuff - that said, the community nurse showed me how to do draining if for any reason she can't come and my Mum ends up in severe discomfort again, at my suggestion because I keep thinking What If this all gets worse?
I get it, I totally get that everyone is in an awful position in the NHS but I can't get over the feeling from the receptionist that my Mum was too much of a bother when she is sick, exhausted and terrified. And she can't be the only one.
I am so sad, and so angry, and I'm sorry for the long post, but until I had to start dealing with all this, because I'm fortunate enough not to have medical issues, I had no idea just how bad things had got. And I voted Labour, because I knew it was bad, just not how bad.