To think that a hospital could provide wound dressings to a dying woman without making her feel like shit.(37 Posts)
I am so cross. My mum has terminal cancer and this morning she went for her second, palliative radiation session on 2 open wounds (her first was yesterday). The local GP surgery dresses these wounds 3 times weekly, these are not minor. My mum thought to take spare inner dressing material with her this morning but she did not expect that the wounds would have been so affected by yesterday's treatment that they had oozed through to the outer dressings. The radiotherapy staff were cross with her as they do not have a bit of gauze and tape to provide to her. My poor mum, they made her feel dreadful. I could weep for her.
I know the NHS is strapped for cash but these dressings are paid for by the NHS anyway (different budget bit though , GP one). Honestly a hospital department cannot provide a fresh square of gauze? And be kind about whether they do or not?
Oh I know, but even a quick email or phone call to PALS on behalf of her mum might be worth while. Or even telling the GP.
I can understand that the radiographers wouldn't have access to dressings, or be allowed to change them (in fact I know that they don't and can't), but they should have been kind about it, and someone should have tried to help by asking the ward to help her out.
Could you go with her tomorrow and ask to see the Superintendant in radiotherapy ?
She really, really doesn't want to complain (or me to). This type of thing is part of what I am finding so hard. If this were me or my DH we would handle a lot of what has gone on so very differently. As it is I have to watch the NHS delays, brush offs and outright mistakes just happen. My folks want to run things, they think they are able to but in reality they are a bit too unassuming and forgetful to get best possible care imo. I am merely here in an observer and support role (unless Dad can't make one of her appointments in which case I really do get the most out of it).
Her GP (apart from having taken way too long to refer her) is well meaning but causes distress when he disagrees with her specialist and my mum is left confused as to what to do. She won't want me to get him involved with hospital stuff.
I have had lovely support from you lot, thank you.
Oh dear, yes that's very hard if they don't want to rock the boat.
I would ask (or suggest they do) the GP or practice or district nurses where she can get a supply of dressings so this doesn't happen again.
Oh and the other thing is does she have a macmillan nurse? Or a nurse specialist? I know a lot of people think you need to be at the end to get a macmillan nurse, but you don't, you can be referred at any stage. The GP hospital consultant or district nurses can do the referral. It would just provide your parents with a bit of extra support and someone on their side.
Thank you for taking an interest saintly.
She does have enough dressings at home. She also has a Sue Ryder nurse (same thing, right?) who has helped get her the blue parking badge and apply for carers allowance. They have her number and have called her with one or two questions but they think they are managing fine and are at a bit of a loss to think how else to use her. My parents are not comfortable looking outside of family for support.
Not exactly the same, but sounds as if they offer the same sort of support (and it may be that their area has Sue Ryder rather than Macmillan).
I think it is often harder for the older generation who don't really think to question medics or complain about care. She might be a good person to ask about dressing supplies though, so that this particular problem doesn't occur again.
It's really difficult when your parents don't want you to make a fuss about something or complain - I've been there with my parents and it was so hard. My mum would say 'I don't want to get anyone in trouble' - but I work in healthcare and know that the unit manager would be really grateful for the feedback and act on it. But I couldn't get either parent to see it and in the end I just had to accept that they were happy even if I wasn't and that was the main thing.
If your parents are managing OK (really managing, not just barely coping and putting a brave face on it) then it may be your Sue Ryder nurse hasn't much else to add at the moment. Could you ask your mum if she was OK with you ringing the nurse if you had any questions? Hopefully that way you could get some support and also let the nurse know when she needs to get back in with your mum.
Thank you for replying
I have no idea if they are managing fine or barely coping. I imagine it is somewhere in between. The practical stuff is all being done (I have arranged all housekeeping stuff), appointments are made and attended, drugs seem to be consumed but me keeping track of that is impossible. I have so far been able to overcome her resistance to taking pain relief in a preventative way. Their relationship is not easy to watch but I can't do much there, it has always been a bit fraught. Honestly what else can an outside party do? Counseling/listening type support is a no go.
I know I could ring the nurse but I have no desire to for myself but I will certainly get the physical nursing help my mum will need, in place, in plenty of time.
My mum died from cancer a year ago,even now I still think there were times when I wish I had spoken up more,not that I didn't some of the time but I realised that I knew her better than anyone who treated her !
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