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Terminal NHL diagnosis - what can we do next?

(4 Posts)
FourArms Thu 01-Oct-09 20:53:12

My sister's MIL-to-be has just been diagnosed with terminal non-Hodgkins lymphoma. It was only diagnosed a matter of weeks ago, so it has been very sudden. She's had a couple of doses of chemo, but they haven't had much effect. She has tumours on her brain, and they have spread. The chemo/NHL has resulted in her becoming distressed and confused.

We live at the opposite end of the country to the hospital she is in. There is no other family (FIL died a few years ago, no other siblings). The hospital are talking about a transfer to a hospice. How easy would it be to get a hospice in a completely different part of the country? How is the transfer completed? Do the family pay for the ambulance if it is needed? The doctors have suggested she might have about 3 months left.

Also, do you choose a hospice? How does all that side work? Are they private? NHS funded? It's all very sad. At the same time we're trying to arrange a wedding, which will take place in just over 2 weeks, brought forward from next June when they received the initial diagnosis. We're hoping to get a Macmillan nurse or something to accompany her on the day, but have no idea how to arrange that yet.

greensnail Thu 01-Oct-09 21:13:11

You can ask for the hospital to refer her to a hospice closer to where you live. It would probably be easiest if you found out where your local hospice is, and let them know that you would like her referred there.

Hospices are funded either by the NHS or by charity (or a bit of both) so you won't have to pay for this. However, they won't neccessarily be able to take your sister's MIL for an indefinite period of time. They are often very short of beds so can only take patients who need symptoms sorting out, for respite for a fixed period of time or if they're actively dying. It may be that they would take her for a period of assessment, but if her situation became more stable, may need to move her somewhere where she could stay for a longer period of time (nursing home, family member's home with carers etc)

Paying for the ambulance would normally be done by the hospital she's coming from. They may not want to pay for this if she's going to be travelling out of area though, so you could ask the hospital social worker to see if there is any funding available for this. The quickest option may be to offer to pay this yourselves though, if this is an option for you (but I wouldn't offer initially - the hospital may be happy to pay for it).

You should probably start looking for a carer now if this is going to be needed to accompany MIL to the wedding, as you'll want to be sure you have someone you can trust. Might be worth phoning your local hospice to see if they can offer some advice on arranging this.

FourArms Fri 02-Oct-09 08:07:50

Thanks for that info greensnail. Will look into local hospices. Luckily there is one very close by to us, so hopefully they'll be able to help.

greensnail Fri 02-Oct-09 09:22:41

Good luck, I hope it all works out as well as it can for you all.

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