Pain relief not working

[mumblechum1]

My mum (81) was diagnosed with kidney cancer about a month ago. We don't know how advanced it is but she has another ultrasound scan on Wed.

She also has 2 fractured vertebrae caused when she fell (is very wobbly on her feet because of all the morphine). This was eventually picked up on an MRI after being missed by the GP and by an Xray. She broke her vertebrae 3 weeks ago now (she has osteoporosis on top of everything else, and also has moderate Alzheimers).

She's at home and my dad who's 80 is the primary carer. My sister and niece are local so can go round several times a week and I travel up for 3 days every 7 to 10 days (500 mile round trip).

My main concern is that she is in a lot of pain. she's on patches which don't seem to be working, as well as up to 50mls of Oxynorm per day.

A couple of weeks ago she was pain free but so doped up she was very unsteady on her feet and sleeping for 16 hours at a stretch.

The Mc Millan nurse went round yesterday and got the GP to prescribe a different type of patch but says this will take 24 hours to kick in and she can only have it on for 12 hours at a time so Dad will put it on her at bedtime so she can hopefully get some sleep.

I keep reading everywhere that no one with cancer should be in too much pain, it's all manageable blah blah blah but the reality is that she is in agony. Talking to my dad today and I could hear her crying with pain.

What can I do? It seems that the GP, hospice at home nurses, District Nurse, McMillan Nurse are all involved but the bottom line is my poor mum is in agony a lot of the time

Any body been through this and have any ideas? I'm going up again Sun to Wed, and would like to be able to move forward.

bump

I've not been through this but you are right, she has the right not to be suffering like this. I think she needs someone assertive to advocate for her. I'm not sure who you need to contact but could you start with her GP? Look into complaints procedure if they're not helpful. Her pain relief needs sorting urgently, now, not later.

I'm so sorry for you & your mum

Hope it gets sorted very soon.

Would reposting in chat mean more mumsnetters see your thread?

Thanks Bakery Queen for your reply, I'll try chat

mumblechum, sorry to hear you are going through all this. Your poor mum. My MIL is on patches, steroids, oramorph (whenever she needs it), paracetamol and another painkiller (i forget the name sorry). I think they can prescribe a mixture of different ones. She has lost power in her limbs and sleeps a lot, she's very confused and talking gibberish, but mostly without pain, just a little in her tummy at night time. I would speak to the GP again to see what other options there are, including the side effects (which can often be quite upsetting themselves). Wishing you all the best.

Thank you very much DearDinah. The Macmillan nurse is coming round tomorrow so I'll put some pressure on him to get it sorted.

Sorry about your MIL

Sorry to hear about your poor mum. Getting the drug balance right in this scenario is difficult; managing the pain completely can often mean the person is "doped up" (I think that's how you put it) which is often not what the family or patient want either (which I think you have eluded to). I hope the Macmillan nurse can help. They really are the experts so hopefully they can offer you a solution that best meets your mums needs

It was being doped up and wobbly that made her fall and break 2 vertebrae at the base of her spine. At least she's home.

Sorry to hear about this. I work in healthcare and hear all this about pain should be controlled but also know that it is very difficult to balance. My poor darling dad suffered far more than he ought to have done and, with hindsight, I think people were all afraid to do enough (possibly the spectre of Shipman?)

I agree the MacMillan nurse is probably your best bet to get this sorted.