Privately Funding Top Up Care

Hi DIL1981,Social services should be able to advise you on what you need to do.The financing system is quite complicated.I got a couple of financial assessments done for my mum who has dementia and is disabled.I had to send in 6 mths worth of mum’s bank statements and bills in order to get her extra carers at home.Later on I had to send in papers to get a financial assessment for nursing care in a nursing home.Our social worker was able to put me in touch with the relevant people.I found it stressful as I was looking after mum with help and recovering from cancer.I hope you can get some extra funding for your mom.Good luck.Jane 

Thanks for your reply winkers60.

Mom has now had 2 nights at home and so far we’ve been (just about) coping with just the allocated 4 care visits plus me being here since she got home. - she’s mainly been sleeping, but we’ve already had a couple of challenges / OOH district nurse calls re catheter issues.

I’m going to test the water and pop home for an hour this afternoon, to see how she copes and to allow the careers to visit without me being here (as I need to prepare for when I’m back at work full time on the 12th).

Still had no clarity on how we can arrange some additional privately funded care, but I’m going to try making some calls to the GP and Palliative Community Team tomorrow as I can already feel that I won’t be able to cope with the current set up as she gets more poorly over the next few weeks.

Thanks again

Good luck with your phone calls.The system is complicated but the gp should be able to advise.I had the most help for mum through social services,we had an allocated social care worker.Our health centre is terrible.I’m glad now mum is in a different area she has much better treatment.Best wishes.Jane x

So sorry to hear that your mum is facing such a challenging time as are you.

my best tips are :   Remember to claim full attendance allowance of £89 weekly which is fast tracked for end of life claimants.  You can ClaimI on mums behalf and her doctor signs a form.  Also the 4 visits is not written in stone.  Your mums social care assessment sets the number of visits without reference as to who pays. It is all based on mum staying safe.  Also get a continuing care checklist done as the nhs will pay if your mum is deemed eligible.  I pay for extra support on occasion for my husband and just use a local agency who bill me.  I pay about £22 an hour.  They do not administer medicine or change pads etc but organise drinks and food. If I have to be out for the day and feel extra support is needed I organise two 45 minute visits extra. I have also got a camera thing set up with an app on my phone for when I am away and worrying.  

There are protocols your gp and palliative care team will now be following.  A copy is available online.  You can be involved in those protocols. They will be having multi disciplinary meetings to which you can have access - the gold pathway.  I am but sometimes I just cannot bear any more administrative flimflam and just spend the cash and get the help.  

macmillan has a help line too.  I must say I am concerned that your choices were 24 hour care or 4 visits.  The first implies a need for night time surveillance and the later not.  I would be asking questions.

I hope you and mum find a way forward and that mum is comfortable during these final months.  My best wishes to you both.

JaneyC

Thanks Janey - thats really helpful.

despite  having a rough few nights, with lots of calls to the District Nurse for additional pain relief for Mom, we’ve actually had some positives this week too.

after a good chat with Mom’s palliative specialist on Tuesday, I feel like I now understand a bit more about what to expect, plus she has referred us to Marie Curie for overnight support - we had our first visit last night (with another booked for tonight) - and it was lovely to be home in my own bed, knowing Mom was being well looked after.

even better - last night was the first night Mom has slept through since she’s been home, so fingers crossed her driver pump is currently at the level of pain relief she needs. She did have to have a couple of top up morphine injections yesterday, as it was the first day of increased dose, but she has been sleeping pretty much all the way through from her last injection at 7:10pm last night (with only 2 x 5 minute chats) and it’s now 9:30am - her cares are due for their first visit of the day any minute now and it will be such a shame to to wake her to check her pads etc.

I understand that it’s difficult with Covid-19 etc, but I just wish I’d been able to have that chat with the Palliative specialist before Mom came home - it would have saved me all that stress and panic I was feeling in those first few days of her being home.

thanks again all