Wednesday, 15 April 2020

Co-vulnerable

UK support and guidance for ”highly vulnerable” people during covid pandemic

I have myeloma. This means I’m deemed high risk for covid. The government promised, early, that people in my position would receive a letter advising us to shield. The reality has been chaotic. I was moaning, to a friend who is a GP,  about the impossibility of getting a grocery delivery. She suggested a user-perspective on what it’s like being “highly vulnerable”/“shielding” might be useful. So, here goes. I don’t know who will read this, or if it will make any difference...

Firstly the process of being identified as "highly vulnerable" is a mess:
  • I received an SMS from the NHS, followed by a letter from the Dept of Health (DHSC). I know many other myeloma patients who did not. The list is clearly incomplete.
  • I’m told the list was given to retailers to match to customer records. That process doesn’t work. I spent 2wks convincing Tesco I am on the list.
  • Tesco asked to see a copy of my letter. It wasn’t obvious to me which letter they wanted to see. None of the correspondence I received looked like an official “entitlement”. It would have been much more helpful to me if I had been given a registration number or something that I could easily pass on to anyone from whom I was asking for support. I have a medical exemption card to show I don’t need to pay for prescriptions. I could get a blue badge to show I am a disabled driver. Why don’t I have a “covid vulnerable” card/badge to enable me to access support?
  • The “self registration” website appears to be pointless. I was told I needed to register on it even though I’d already had a letter. It was not clear why.
  • I know several people who attempted to self register after not receiving letters. They got an automated response telling them to contact their GP. It seems you can’t self register... so what’s the point of the website?
  • GPs have clearly been given conflicting advice, as I know some have told myeloma patients completely contradictory things.
  • In normal circumstances, my first point of contact for myeloma stuff would be my consultant/CNS. No-one has advised us who to speak to at the moment. Should we continue to contact the hospital, or our GP?
  • I’ve had no communication at all from the hospital, which is surprising as they know me, and my circumstances, best. It’s ridiculous that the hospital can’t send an SMS to all its myeloma patients. (After all, my son’s primary school can communicate with parents by SMS.)
  • So, overall, the process for getting on the list is totally confusing. We don’t know if we are on the list; how to prove it if we need to; what being on the list really means; or who our points of contact are. And we know different people are being told different things.
  • I have no complaint about my GP - who has called me personally twice, or my hospital team - who have answered all my queries. The problem is clearly a total lack of systems, a total lack of preparation, a failure to think through the process, and inadequate communication to us. It has left patients very confused.
  • On top of that, we find ourselves having to justify whether we are vulnerable. Given the sensitive topic (our health risk), it’s unpleasant and intrusive to find oneself having to justify one’s need over and over again.
The shielding advice is ridiculous:
  • A one-size-fits-all approach doesn’t recognise that our situations are different. My hospital team, for example, don’t think it is necessary for me to stay at home. I agreed with them it’s ok for me to go for exercise, but not to the shop. The published advice is inflexible, which ends off meaning we make our own interpretations of it. It would be far more sensible if the advice was a bit more adaptable. Even better if our (hospital) doctor had been able to provide a tailored version of the advice. The problem with advice that doesn’t “fit” is once you’ve discounted part of it, you take the rest less seriously too.
  • Some of the advice makes no sense. It says the people in my household don’t need to follow the same shielding behaviour as me. But they clearly do, otherwise they might just bring covid home.
  • Some of it is impractical. It says to stay 2m from people in one’s own household. I have a 7 year old. How does anyone think I can maintain distance?
  • Basically, the advice doesn’t reflect real circumstances. What’s the advice for people with young families? What’s the advice for elderly people who need visits from care workers? It’s as though whoever wrote the advice didn’t actually think about real people.
The other thing that doesn’t seem to have been considered is the support we might need:
  • Is seems obvious to me that getting food is a major problem for all “shielded” people since no one from their households should be visiting stores. Yet the retailers aren’t capable of offering deliveries. Not helped by government telling the whole population to shop online - the result of which is that delivery services are overwhelmed. It doesn’t seem that there’s any functioning system of support in place here - and I know it has become highly stressful for many of us. If people can’t get a delivery, they’re forced to risk their lives by going to the shops.
  • Credit to my local council on this one. They have coordinated volunteers who have phoned me twice and promised me food parcels. It’s the utter lack of anything from central government that is the problem.
  • The other areas of support we might need - with medicine prescriptions, with hospital appointments - haven’t, to my knowledge, been addressed at all. As far as I can see all that has happened is we've been told to stay home, but not been given the support we need in order to be able to do so.
  • It goes without saying that we’d appreciate the ability to be tested, since if we knew we’d already been exposed to covid we wouldn’t need to stay locked up at home for months on end. And even if we hadn’t been exposed, widespread population testing might give us confidence that the risk in our environment is low. The failure to test is a prison sentence for us. When the government talks about the need, or not, for testing, I've never once heard anyone mention the impact on vulnerable people in the medium term. When the lockdown restrictions are lifted, how will we know if it's safe for us to leave our homes?
  • It is also worth pointing out that every time a government briefing or media report boasts that “most of those who died had underlying health conditions”, it feels like we are considered less valuable/ more disposable than other people. Media stories that doctors may decide to “save” ventilators and ICU beds for other people by denying them to us... that kind of stuff doesn’t exactly make you feel good or fill you with confidence.
Overall, it’s been a pretty unpleasant few weeks of clunky unthinking bureaucracy. I’m used to living with risk of dying. I’m used to periods of isolation. In some ways, we vulnerable people are better adapted to this situation because it's not so new to us. But the way we have been treated by the DHSC feels cavalier, poorly planned, badly executed, muddled, inconsiderate and lacking in compassion. It doesn’t feel like “the system” understands our situation, or really cares. I feel very sorry for those on the ground, front of house - our GPs and hospital teams - who are left to pick up the pieces for us when the infrastructure above them is broken.

It doesn’t feel like the DHSC has given us sufficient thought - which is alarming given that covid is going to be around for a long time, and the risk isn’t going to go away. If we get to the point where my wife is told she can return to work, and my kids must go back to school, but the advice to me continues to be to shield at home, then what? At that point do I have to move out or barricade myself in a bedroom?

5 comments:

  1. Hi Alex. Funnily nick and I had the same conversation last night about what to do a) next time I have treatment and b) when the kids go back to school or he starts working away again.
    We don’t believe there is a half way house where we can distance. I’ll still be touching all the things they touch. I suppose we could ban them from the kitchen and living area.
    So we’ve decided our options are:
    1: I isolate again and probably become very depressed
    2: I move out of the house and the rest of them can carry on and at least I could live vaguely normally
    3: we just suck up the risk and go back to relatively normal living .... and live pretty much in fear of one of us knowingly having covid.

    I wish I could be tested. As nick said I might have had it and not know. This isolation period would have been a waste then. And none of us would need to worry about me at least. I wish the kids could be too...and nick who was ill a while back for a long period.

    I’m a bit different to you. I don’t blame the government for once. I think they’re working super hard to try to get things right and to correct mistakes as they go. They’re only human. I think any government would be trying their hardest and having to work it out as they go. And I have a friend who works for the cc looking at supermarkets and she is working every hour (alongside trying to home school her kids) to try and make things work for the country.
    People are trying.
    But I do agree that it is sooo hard for those of us who have been packed up and asked to isolate. It’s sort of like they can forget about us for at least 10 weeks while they sort out the others. Which would be fine sort from they’re going to end up with mental health issues to rectify like they’ve never known!!
    Haha. This has become an essay. May have to copy and paste it to my blog!
    Hope you’re still keeping well. I’m just relieved my numbers are staying stable. For those whose aren’t this must be a super scary time. I’m just relieved I don’t have to worry about when my transplant will be...yet.
    Take care and love to you and all your family. Glad to have your support.
    Deb

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    Replies
    1. Yes I agree with your 1. 2. 3 options. I can quite imagine feeling that # 3 - ”sod it, it’s only risk” - ends off being the one. I wonder if anyone in DHSC appreciates that that is the choice a lot of people may have to make?

      I’m sure the government are doing their best - now. I’m also sure that a decade of austerity, plus the distractions of brexit, meant the necessary planning wasn’t in place when this started. It’s not as though pandemic is some unanticipated crisis. Lack of kit. Lack of staff. Failure to implement the recommendations of its own pandemic simulation exercise (https://www.telegraph.co.uk/news/2020/03/28/exercise-cygnus-uncovered-pandemic-warnings-buried-government/).

      But making sweeping criticism is beyond the scope of my blog! So, keeping it tight: it seems inexcusable to me that the DHSC is unable to communicate a consistent message to all myeloma patients, and unacceptable that the advice we’re given doesn’t even factor in the reality that some of us have young families

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