Who else is suffering the side effect of coronavirus

janetg 4 years ago

13 replies

As if having husband dying of cancer wasn't bad enough, today I arrived at his ward at usual time (just before lunch) and since late afternoon yesterday, a sign on the door told me about the changes to visiting hours: one hour - 6-7pm.  And that's after an hour's drive.  He has been there for 4 weeks, is on DNR list and they are allegedly trying to get him into a nursing home.  After a serious argument with a senior nurse, I was allowed in - but there was NO way that would work tomorrow.  It appears new NHS 'rules' allows nothing for next of kin who cannot drive (with any hope of safety) at night.  Is this happening everywhere?  My husband is at Worcestershire Royal - and they had already finished off ANY confidence I had left.

Clare 4 years ago

Hello Janetg,

Welcome to the community. We’re sorry to hear about all that you and your husband are going through. Supporting a loved one who has a terminal illness can be an emotional and stressful time and we are aware that the impact of the coronavirus is heightening this for many sadly.

You mention that you are unable to drive at night, if this is due to a medical condition you may wish to speak to the ward manager to see if the hospital is able to make any allowances for this. If you feel uncomfortable in speaking to them directly there would also be the option of discussing your situation with the hospital’s PAL’s (Patient Advice and Liaison Service) team. PAL’s are there to offer confidential advice, support, information and part of their role is to help resolve concern’s someone has when they are using the NHS. There is information about the Worcestershire Royal Hospital’s PAL’s here  - https://www.worcsacute.nhs.uk/contact-us/feedback/complaints

Our Support Line offers a safe space to talk if you feel you would like to speak with someone. You can reach us on Freephone 0800 090 2309, or by continuing to chat on this community. We also have an information on our website regarding coronavirus, https://www.mariecurie.org.uk/help/support/coronavirus  Hopefully others here on the community will also share their experiences with you.

Take care,

Clare – Support Line Team  

janetg 4 years ago

Thank you Clare

Of course, I'm in the kind of state that makes talking (to strangers OR to friends) near impossible - typing IS a bit easier.  I tried to explain my difficulties to a senior staff member - got NO help at all - everyone is in the same position - tough luck - seemed to be the message.  The situation got even worse this morning when I had a visit to my home by 3 ambulance crew - the same who had taken him to hospital 4 weeks ago.  And they came to 'investigate' (goodness knows how) a complaint made to ward management about something that was overheard in one of his leat lucid states.  I had been asked about it by a senior nurse several days ago and thought I might have made her see sense - but it seems she couldn't combine the side effects of chemotherapy with anaemia AND severe depression and come up with the nonsense the ambulance crew were meant to be doing a 'follow-up' on.  I spent 30 minutes explaining it to them (in words of no more than 2 syllables) and gave the one who claimed to have IT knowledge full access to my husband's computer.  He declined the same access to mine.

The personal humiliation and distress caused by this has given me something else to try complaining about - a complete breach of patient confidentiality.  Ay least I got a call from someone working on finding a nursing home that can help - chances of success - anyone's guess.

Clare 4 years ago

Hi Janetg ,

I’m sorry to hear that you are feeling that things have been even worse today and I hope this morning’s issue will be resolved soon. Hopefully the call you had about finding a nursing home for your husband will mean that this is moving forward, although I can appreciate why you may be finding it hard to feel positive about the chances of this at this time.

As writing is a bit easier for you please keep sharing your thoughts and feelings here on the community if you find it helpful.

Best wishes,

Clare – Support Line Team

janetg 4 years ago

Hi Clare

I'm not sure I do.  Everything I try backfires big time.  I set out to try to drive to Worcester - nearly hit a muntjac on a B road - then got onto the dual carriageway and  gave up before causing an RTA which would have been inevitable once I got to the traffic repairs part of a big roundabout, lol.  So got home alive - tried to reboot my 'puter and had a mega-crash. Thankfully, am now back online - at least I might be able to get a complaint in to the right place about the appalling breach of patient confidentiality (I AM a retired campaigner so it MIGHT give me back the will to keep trying.)  Now I must try to ring the ward and get someone to explain to him - and find ou if they think he's eaten enough to keep a mouse alive.

Janetg.

Clare 4 years ago

Hi Janetg, 

Your car journey yesterday sounds as though it was really stressful and then to have computer issues when you got back was the last thing you needed. Being a retired campaigner, I’m guessing makes you a determined and resourceful person, I hope these strengths will help you through this time.

Take care,

Clare