This Week (just passed)

Lunna House, Shetland, overlooking the anchorage

This week began 9 days ago. I was self-isolating, having tested positive a couple of days before, and I’d just made the terrible mistake of saying aloud to Francis how conducive I hoped this was going to be to a quiet spell of writing. I’d been playing my usual game of not exactly mentioning the current project, clocking up a few hundred words here and there and hoping they would turn into something. They’d crawled nicely past the 30,000 sticky point and my characters had anchored in the evocative West Lunna Voe in Shetland. They and I were both eager to know what would happen to them next. A spell of enforced seclusion seemed the ideal opportunity to find out.

What actually happened was a message from Delyth, a dedicated, passionate, dementia nurse in Wales introducing Liz Saville Roberts MP who was offering to support the John's Campaign on-going struggle for the rights of people in hospitals and care homes to maintain their relationship with their families. Then a message from Liz herself. I don’t really want to look up my email reply; I know the flood gates of my anger at the extraordinarily restrictive and damaging policies in Wales – and the equally extraordinary lack of public protest – erupted onto the very people who’d just popped their heads above the parapet.  I lambasted the Welsh government, Welsh NHS, Public Health Wales, their Care Inspectorate, their unfulfilled policies … 

What I was really doing of course was trying to defend my personal yearning to be hidden in that Shetland anchorage.

Islands of adventure?

Later that night I received one of those desperate, un-ignorable appeals from a daughter in Yorkshire. The hospital trust where her mother is a patient had closed the ward. Her mother has dementia and a stroke.

Her speech doesn’t make sense. Me not visiting her and being able to speak for her will be terrible.’

Much of the following day was spent not in Shetland but on Twitter, trying to find why this closure was so draconian -- and who might be able to help regain this daughter’s access. Someone recently queried the usefulness of Twitter as a medium to discuss health and social care. I will tell you that I think its utterly bally marvellous.  Very soon on that Sunday (yes Sunday) people were rallying round and talking (off-line) to others to try to discover whether this was indeed the intended policy and, if so, who could challenge it. By the end of that day a deputy chief nurse had been reached – admirable woman -- and she was volunteering to help.

But even deputy chief nurses have their limitations in large trusts with several big hospitals and a staffing crisis. It would in fact be several days before the right people spoke to the right people and the message reached the daughter that she would be welcome to continue caring for her mother. Meanwhile, in Wales, Liz Saville Roberts was putting pen to paper and producing the first draft of a beautifully written, compellingly argued account of her family experience, with an attack on ignorant policies. Stung by remorse as to my initial bad temper, I got to work finding relevant information and references, realising that during the last seven years while Nicci Gerrard and I have been trundling around the UK preaching the principles of John’s Campaign we have accumulated quite a fund of knowledge and contacts -- though not the sort that translates easily into the writing of sailing adventure fiction.

The following day Liz had finished her article. You can read a shortened version in tomorrow’s Observer newspaper and the full text on our website on Monday. She’d also secured herself a slot for Prime Minister’s Questions on Wednesday. It was no good me venturing out into the Voe. We needed to talk, think, talk, tell people, make the best of this chance.

Meanwhile the Christmas / New Year holiday was over, offices were opening; there was a letter to Public Health Directors to be sent, next week’s House of Lords amendment stage for the Health and Social care Bill to be discussed and the never-ending messages of pain from people wrongfully separated from those they love and want to care for – and who need their care. 

On Wednesday, Liz put some of this pain into words. 

Liz Saville Roberts PMQ 5.1.2022

The effect was immediate. You’d think no one had heard it before. Time spent extending the media range felt like time well spent. Here’s the next day follow up on BBC Radio 4 Today programme. 

Positive messages came from the Secretary of State; a meeting has been arranged for next week. Other campaign groups have potentially helpful invitations pending. The British Geriatric Association put out a position statement: I wrote them a blog. Will next week be the one when statutory change finally happens?

I wish I thought so. Meanwhile the tide of individual distress and loss continues its one-way flow. Here’s another person from the same Yorkshire city:

Last Jan 2021 my husband, who has a diagnosis of young onset Alzheimer’s was admitted to G (specialist hospital for dementia) under a section due to him becoming aggressive.

At the time he could talk, walk, use the toilet and eat independently. As it was high covid time I was not allowed to go with him or visit for 5 weeks. They told me he was constantly looking for me. He became very agitated and aggressive with staff resulting in him spending over 100 hours in a seclusion room on 11 occasions.

He developed covid, cellulitis in his legs, wouldn’t sleep in his bed, had seizure, allergic reactions, 2 bad falls to his head. Resulting in 4 trips to A&E. When he left to go into a nursing home in May he was doubly incontinent, couldn’t feed himself, lost his speech, and bent forward and poor mobility and required 24 hour 1 to 1 care.

 At a best interest meeting I was denied the right to bring him home. Now he has poor health. He is currently in hospital and now I am covid free I hope to visit soon.

 I strongly feel that if I had been able to go with him to G the outcome would have been much better. I lost my husband. I feel deep regret that I let him go.

Now that you might think was bad enough. (It’s currently under review in the Trust concerned as such damage was done, unnecessarily.) On Friday morning I had a phone meeting with a dementia co-ordinator in that same city who assured me that every thing which had been happening was a mistake and had been sorted out and dementia carers would be welcomed to continue their help – etc. Almost simultaneously I received a distraught message from this wife. Her husband, in the hospital, was refusing to eat. She had asked to go in and try to feed him. They said no, because that would be a visit – so they were going to put a tube down his nose.

(It’s okay – that one was sorted, with some further expenditure of email and twitter time.) 

But truly, how can this be? You’d put a tube down someone’s nose rather than allow his wife to feed him? Because that would be a visit?  Really? Then, knowing that, how can one not protest?

Another week beckons – my nautical adventurers have upped their anchor. I wonder how many miles they’ll manage to achieve before the horizon closes down again?

Empty waterscape, louring sky




Umberto Tosi said…
I'm sorry to read of your husband's troubles and your own struggles with COVID, patients' rights and life'further challenges. I can relate to the hospital family issue. I was hospitalized for eight days last March with a heart condition -- fortunately, corrected with an implant for now. I was allowed no visitors, even though I had tested negative for COVID was was fully vaccinated, as was my partner, Eleanor, who was not allowed up to my room the whole time. I found it stressful and desrpressing -- prison-like, if that's not too dramatic. It seemed to me not so much a health issue as a rule for the convenience of staff. Anyway, good luck.
Julia jones said…
Thanks Umberto - and if you found just 8 days separateion 'stressful and depressing' - and you have your full memory and cognition - you will easily understand the terrible paid suffered by people in this position who do not understand separation in their head, but feel it deeply. For the record I'm fine - covid isolation no problem at all, as not ill. My husband, Francis, is also fine, though the 10 days he spent recently confined to his bedroom did again give some insight into how hard this might be for others. There are people living in care homes, as well as hospital, who are clocking up weeks and weeks of enforced isolation just to keep then 'safe'. The situation of the husband with dementia in my article (his name is David) demonstrates just how permanent that damage can be. It's why we run John's Campaign.
Julia jones said…
But I should have paused to wish you continuing good health. A heart procedure sounds pretty serious. Please take care ...
Peter Leyland said…
I have just read the very moving piece by Liz Saville Roberts in my Observer Julia about the struggles for the families of those with dementia, and that of the sufferers themselves. Thanks for alerting me to the article. My sister, with help, now cares for her mother-in-law who is in the same situation.
Julia jones said…
Thanks Peter - please reassure your sister that she is not alone
Peter Leyland said…
Thanks Julia. A small group called Carers First meet online each month to discuss books we have chosen in advance. My sister joined and has found it really helpful. I will mention John's Campaign and the article by Liz when we meet on Wednesday.
Julia jones said…
We have a reasonably informative website which, for instance enables you to look up your local hospital's Johns Campaign pledge (SOMETIMES helpful in persuading them to honour it!)
The tragedy is that all this suffering has occurred too late! Boris Johnson is personally responsible for tens of thousands of unnecessary COVID-19 related deaths, on account of his inaction and decisions taken too late: a month too late in March 2020, ands at least two weeks too late in autumn 2020. His inaction in December 2021 is equally unforgivable: I regards the current 150 COVID deaths per day completely unacceptable, and most could have been prevented.
And all these people, as described above, have suffered too much, because government action was taken too late.
The situation in Scotland has been marginally better than in England.
My mother went into a nursing home after her stroke over xmas 2018. The stroke was so bad she still cannot speak or move more than the occasional finger, and is being fed and medicated by a PEG tube direct to her stomach. She needs 24 hour care, so despite several valiant efforts by my Dad (who is heartbroken and now lives alone), he has been forbidden to take her home. For almost a year during the height of the pandemic, the nursing home locked down and allowed no visiting at all. Then we were allowed to see her through a window (from outside), but she obviously could not communicate with us and looked increasingly confused and upset. This upset me so much, I stopped going. Eventually, just a few months ago, Dad was allowed into the home on condition of a negative covid test each time, wearing full PPE including gloves apron and mask, with a screen between them. He reports Mum is still (understandably) upset and does not appear to recognize him at all. All e wants to do is hold her hand. Residents have been confined to their rooms, so she no longer gets any therapy that might improve her recovery, and only one visitor is allowed per resident, which means I have not seen Mum since last August, let alone given her a hug. She is 90 years old and may not have long left. I will never forgive the government for this.
These are awful stories. Like you, Katherine, I will never forgive the government - their total incompetence has caused at least some of this.
We've managed not to catch Covid so far, but the last time I saw my husband alive, late in 2020, was via a video link from the hospital (he had advanced cancer) that for some reason could only be viewed on an iPad, which we haven't got in the house, so my older son, who has got one, actually filmed it on his phone as it was going on and sent it to my phone. (It sounds clunky and was very much so!). There must be 1,000s of these stories all round the country. All while government ministers were partying.
Ruth Leigh said…
My goodness, Julia, you have been doing such good work. Sadly, I can only agree with the other comments. Each time I think it can get no worse, I read stories like these, topped off with the news that the entitled, cold-hearted, venal bunch at Number 10 were partying while we common folk observed lockdown rules. Good for you, though. We can't change everything, but we can all change something. We went to Shetland in the summer and loved it. The perfect place for a writers' retreat - if you ever get any writing done.

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