Hi, my mum is 81, has stage 2 multiple myeloma and back in October last year had a stroke which paralysed her down one side. She returned home from hospital mid December with carers 4 times a day. I am increasingly concerned about night cover which doesn’t seem to be supported by the NHS. Can anyone give me any advice about good agencies to contact (South East London) and what to expect? At the back of my mind is the thought that mum may be more comfortable in a hospice but she has always preferred to be at home and I want to respect that. Thank you for any help / advice you can offer.
Did the hospital arrange for an NHS Continuing Healthcare Assessment before discharge?
CHC / NHS Continuing Healthcare / NHS Funded Care ?
Main thread :
Does NOT need a nursing home setting … Pointon case , which is covered in the main thread.
Many agencies will advertise night care cover … hardly any will display their costs upfront.
Internet search … SOUTH EAST LONDON CARE AGENCIES … will reveal the players.
As for reviews , the Home Care UK site a good starting point :
This isn’t my area of experience, but others will be along who have.
Its my understanding, that when care visits are social care funded/arranged, except in very rare circumstances; if an elderly person requires night visits too, then it is considered that residential care is required.
Some agencies do offer night care, for private funders.
CHC can cover 24 hour care.
Is your Mum receiving palliative care from a hospice? This can be delivered in the hospice or at home.
Thank you so much for your replies. Mum was never offered an assessment for CHC when she was discharged. She funds her carers herself (via Council). Does that mean it is too late to apply for CHC as she has been home since mid December? Nobody has talked to me about palliative care and I need to find out more. I am not sure at what stage it applies (mum was stage 2 Multiple Myeloma October last year) and though things weren’t great she was steady. She is due blood tests & review via GP which I need to chase up. This last week has seen a significant dip due to getting a chest infection… making it extra hard at night. She has not seen a social worker yet, again need to chase it up. I really worry about the night time and being alone and a bit confused. Thanks Chris for the link to the Home Care website, I will look into those. Thanks once again for your advice, I have only just come across your site and it’s really helpful.
NEVER too late to apply for CHC / NHS Continuing Healthcare !!!
I have heard tales of CHC being retrospectivley awarded, even posthumously. Has been mentioned in cases that have gone to Ombudsman
Has anyone been open and honest with you about how much time mum has left? This is a horrible question to ask, but really important.
Thank you all again, that’s encouraging. I will find out about CHC and NHS Continuing Healthcare. No Bowlingbun no one has said anything recently. About 4 years ago I was told by the Oncology Consultant that the average life expectancy was about 4 years but my mum surprised everyone by keeping on going in her steady determined way. After the stroke its different as she is finding it really hard being bed bound and dependant, I am still trying to show her there are things worth staying for but I can tell that her determination is waning, she is eating a very small amount, doing increasingly less for herself and no longer wants to do the exercises that were helping get some mobility back. I am not sure they are the signs that a gp would notice but they are the red flags that go up when you know someone really well and you can tell what they are wanting to do even if they outwardly appear to still have strength. I will ask the gp about the myeloma tests tomorrow and find out about palliative care at home. Thanks once again for your help and advice.
Don’t forget it could just be a passing episode of low mood as part of adjusting to her new circumstances. Some people just keep on bouncing back.
I agree with nhshater,
After my Mums second stroke she stopped eating, my Sister was convinced she wanted to die, horrid talk of PEG feeds and constant GP visits. Mums appetite gradually came back as did her will to live.
Just keep fighting your corner.
Ah thanks, that’s brilliant, I needed that!
I’m sorry to hear about your mothers condition. If you’re looking for advice about good agencies, I’d suggest looking into https://www.liveincarefriends.co.uk/. You can post up a job and/or look through a wide selection of carers that would best suit your mothers needs. I hope this helps!
You are in a very difficult situation, so make sure you are kind to yourself, as well as mum. Tiredness and utter exhaustion should not be ignored.
I m dismayed that you are not getting much support.
Do you have Power of Attorney for mum? If not, this needs to be sorted as a matter of urgency. A solicitor could come to the house. This will enable you to insist that the doctors talk openly and honestly to you.
The GP can arrange a “Fast Track” NHS Continuing Healthcare Assessment. I would suggest writing or emailing the Practice Manager and asking him/her to ensure that it is done immediately. Make sure you have it in writing, don’t ring, then you have no evidence.
Now I’m going to suggest something upsetting, I did it with tears streaming down my face.
Google “Signs of Dying” and you will find lots of really helpful information written by people from the hospice movement. With the information I read, I could support my own mum so much better, concentrating on making sure she was comfortable.
If you have a local hospice, ask to speak to them about mum and her condition, maybe ask for a visit? Our local hospice has a “Care at Home” service, they were wonderful when dad was dying of prostate cancer. He spent his last week in the hospice, mum was very disabled herself, and this was easier for both of them. There is no “right” or “wrong”, everyone is different.
Have you spoken to MacMillan’s helpline? I used the predecessor, Bacup, and they were great. I wanted to know how long dad had left, the GP wouldn’t tell me. The helpline asked me about dad’s symptoms and said he had about 6 months left. They were right within a week.