This is a very interesting subject to me.
My current situation is this:
My 76 year old DM was diagnosed with stage 4 ovarian / omentum / peritoneal cancer just under two and a half years ago. In the first few months she had chemotherapy with a view to shrinking the tumours, which severely negatively impacted her quality of life, but did buy her some time. Last summer when scans revealed her tumours were growing again, she was persuaded to try another round with fewer sessions and reduced medications - she had one session and the side effects were so bad she ended up hospitalised for a week. She then rallied a little, and declined further treatment.
In February she was discharged from her consultant and moved to palliative care. At that appointment it was said that her increase in abdomen size was tumours rather than fluid. Within weeks she ended up needing to have between 9 and 1 litres of fluid drained from her abdomen and now has a drain that district nurses perform every other day.
Last week she had become so unsteady with oedema in her legs and peripheral neuropathy in her feet that it became obvious she could no longer live alone shielding with me going to her flat every day to give personal care and shopping etc - in addition she has such low sodium that her GP ordered blood tests and then had her admitted ten days ago for a saline drip etc to help. On that day she phoned her Macmillan contact to say she no longer felt safe at home and was at risk from falls, as well as telling her GP the same. The secretary of the Macmillan unit said that after consulting with the team, it was not allowed for her to move to our home where she would have a bedroom and ensuite, because of lockdown rules. They also said there were no hospice beds available because they have been shut down due to staff shortages and Covid pressure, although in our fairly large county I believe deaths are at about 50 (ish) and cases in the low hundreds - less than 300 last time I looked. No alternative suggestions were made as to how to manage the situation - I could not move into her one bedroom flat with her and share a bathroom in a shielding situation and my DP would have had to start going out to deliver shopping and prescriptions etc - another added risk on top of the journeys I had already been making (masked, gloved etc).
Fortunately her being admitted to hospital meant that the OTs had to risk assess her living situation. She was in for 24 hours and the consultant couldn't wait to get rid of her and implied that her admission had been over zealous despite her GPs opinion. He also said that IV treatment for low sodium could not be administered at home only in tablet form. The reason why this is important is that the low sodium is making her week, dizzy, and unable to eat anything other than eggs and one particular yoghurt because everything tastes disgustingly sweet and makes her nauseous and sometimes sick. This has been shrugged off somewhat as "just one of those unfortunate things". And she doesn't have thrush (another investigation done). So her nutrition has fallen massively, she is getting weaker by the day, and had had a couple fo falles while alone.
Now I KNOW she's dying. But she's a fighter. She is proud. She is absolutely against bothering doctors unless it's urgent - so when she is sobbing to a GP it's serious.
So ten days ago, in a 24 hour period we moved her electric bed and recliner to our annexe, bleached everything to within an inch of its life and she was discharged to us.
Macmillan nurse has since said this is fine , so I don't know what the secretary was smoking - but she certainly gave my DM the message that all that mattered was Covid. The things that are affecting her dealt with in a 50 / 50 manner, with an element of "hot potato".
Today's District Nurse was so awesome I cried when I buttonholed her outside to ask if her legs leaking plus all the other mounting issues were a sign of real decline. She is referring for a hospital bed, OTs to assess for other equipment, nutrition advice etc etc..... which Macmillan have been very slow to get involved with - if one can get through. before lockdown she was assured of Macmillan attention and visits at least once a week - since lockdown it's been increasingly difficult to get through.
Sorry this has turned into such a ramble. I think the point I have been trying to make is that it seems that lockdown rules are over-looking that if resources aren't there to provide professional care and family are willing to step up, the "Covid - rules" cry is going to leave people in limbo and a precarious situation. For days my heart was in my mouth thinking that some authority would come and take her due to risk - which as I have been doing everything I can with the rules to keep DM safe was no more than her being in hospital overnight, nor the day when she went to have her drain fitted.
Two of my friends have had their chemo suspended and are in their 20s and 50s so by no means at the end of the line if you get my drift.
So by the law of averages, if I know 3 people in this sort of situation, most people must know 1 or 2 - and if you start doing the maths I'm terrified at the potential for non-Covid harm and deaths.
Ages ago I said on a thread that a list of NHS non-Covid services and contact details should have been issued. We all know what to do if we have CV symptoms, but for everything else (bar 999 style emergencies) it is much less clear and can lead to multiple telephone calls before the right advice can be given when the usual routes are changed. I'm a bit baffled why entire hospitals have been cleared and are "quiet" (fully understanding the peak scenario) yet people are suffering and being denied things which would take pressure off the NHS by dealing with them now rather than when more significant and costly intervention will be necessary.
The staff we have been dealing with are lovely and I am very grateful to them - but it's obvious that Covid is the only real priority according to policy right now, which is impacting them too.
Something has gone very very wrong with all this.