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Hi, I'm quite new to the site and to the world of Cancer. I have a family member with Stage 4 brain cancer who, although is doing really well and responded brilliantly to radiotherapy, is not doing so great with everyday life, partly due to the (apparent) complete lack of information and follow-up care from his hospital. Obviously he can't drive any more, his wife doesn't drive and they live a little way from the hospital so transport can be difficult and uncomfortable, via a bus or forking out for a taxi. He was diagnosed in September, has completed a course of radiotherapy and has another appointment with his consultant soon. He and his wife are both 65, and, apart from the Hospice nurse phoning quite regularly to see if he's nearing his time to go to the Hospice (!), they've heard from no one, which I find both outstandingly insensitive and uncaring in equal measure. We visited at the weekend (we're 250 miles away and try to go as many weekends as we can) and I spoke to his wife and asked a few questions before I came to the site to have a rant. She feels as though no one is really interested and that, now he's completed his radiotherapy, they've basically just been left to fend for themselves. I'm so angry at the lack of follow up; they've not even heard from the Nurse initially assigned to the family. Perhaps it's me being over-sensitive and I've got it all wrong, it's standard procedure and I really do appreciate how snowed under Hospitals are these days but surely there should be some sort of communication at least from the Oncology department, Macmillan, palliative "care"? What else can I do for them? I know I'm a long way away but I will do whatever it takes to get them the best care and information they surely deserve. They've worked bloody hard their entire lives, they're good people and it's like they've both been thrown on the scrapheap. To add a final insult to injury, the adjustable bed they ordered over a month ago STILL hasn't arrived and my mother-in-law is on the 'phone to Dreams every single day, sometimes twice a day and gets fobbed off every time; she's at her wits' end. My father in law has to sleep in an armchair as he can't lay flat any more; it causes the most horrendous headaches so he's been sleeping in an armchair in their living room. We don't know how much more time he has but it's a damn shame he's not being afforded the dignity he rightly deserves so that he can enjoy what time he's got left and while he's still "well" enough. Can anyone PLEASE tell me what, if anything, I can do to make sure they're given every possible help/advice/home visits they're absolutely entitled to. Thank you. A very angry EllieMay
Good morning Mark, thanks for your reply; I must admit I hadn't thought of the Red Cross; I'll contact them and see if they can offer any help or advice also. An update on the bed situation; still not arrived. Unbelievable. I've asked my in-laws for their order reference number so I can give the suppliers a rocket and if that doesn't work the only thing I can think of is to contact the media in some way. Don't really want to go down that road though. Anybody got any ideas on how to complain "nicely" without losing my temper? ! Thank you for your kind words Mark and all my very good wishes for you and your family too.
Yes - threaten to go to your local MP AND the local press. Give a deadline when you will do this by. It means you have given them a reasonable opportunity to correct their failings so far. Worked like a rocket for my mum! Immediate response.
Terrible that we have to do this, eh?
With regards to follow up medical treatment - there should be follow up oncology appointments being booked. The first person to get in touch with is your GP. They will take care of the day to day management of symptoms. If prescription medication isn't enough and hormone therapy/radiotherapy/chemotherapy would be of use, they will sort out the hospital appointments. They should also be able to provide details of organisations that provide community and carers support and financing. The Macmillan phoneline are also really good with that side of things.
I agree that its a pity that we're the ones that have to do the chasing - but I've found that unfortunately, we're the ones that need to keep pushing to make sure follow up and appropriate care happens. Good luck. It WILL happen, its just a case of those who shout loudest get the response.
Be Brave xxx
Hello Elliemay so sorry to hear about your family member. I can only say that the bed they need should be provided for by the OT concerned, they should not be going through the expense of buying one themselves. It really is uncaring and annoying that they have to go through all of this on top of the cancer, and for to have to sleep in a arm chair is unforgivable. Hope things improve.
Hi and thanks for your comments, I found them really helpful. The bed has finally been sorted and my FIL sent me a lovely photo of it all made up and him stood by it with a huge grin on his face! I've done a little more research and will share with everybody in case it may help someone else. Complaining LOUDLY works, threatening media coverage works wonders (thank you for that, Be Brave), MacMillan guys on the 'phones deserve a medal, if you're worried about a relative being on their own at home while you're out/at work, you can contact a company that provides a push-button device to call for help, either via a pendant worn round the neck, a wrist-strap or a separate device. One of the country-wide companies is Aid Call. Peace of mind. If I find out anything else, I'll post up on the board. Take care everyone.
Hi everyone, just a quick update to the info. I left yesterday. When I got home from work last night I found another leaflet that gave details of a medic alert company and this is the one I think we will probably use for my relative. It's called Lifeline and they supply either a wrist band, pendant or base unit. The price seems very reasonable too and I think will give incredible peace of mind both to the patient and family members. They have branches all over the country and their number is 01323 644422, web site is www.welbeing.org.uk, Obviously money is tight for everybody and a friend whose sister-in-law works for them suggested contacting your local council first as in some instances, this service can be provided by them. Might be worth looking into! Take care one and all and I wish you well.
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