I don't know where you are but I have a friend who specialises in just this thing.
Her website is www.rutlandcaresolutions.com if you want some more details please let me know.
Chc means the health service will foot the bill. They should have a named District nurse who is the 'main' manager of the terminally ill persons plan of care. Should have so many visits a day and Macmillam carers can sometimes stay overnight to give the spouse a break. As an ex district nurse we often visited people up to 4-5 times a day to help with washing,toileting etc.
24 hour care at home is not achievable at least from the areas I know and sometimes if a spouse cannot cope in between visits then their loved one may need to go into 24 hour nursing care or a hospice. If CHC is in place then this care would be paid for.
The relative does not need to go into 24hr nursing care home. hospices is for respite or end of care if already there, and for pain management.
Many terminally ill people prefer to be nursed at home with added support from a multidisciplinary team which will also help support the spouse and family.
Care will be enhanced.
All question will be answered and concerns addressed. If your relative spouse has health issues and not fully on the ball, it is a lot to absorb, then the spouse can have someone there to help with the questions which may be need to be asked. Also be put forward as an advocate. There are Advocacy services for this very situation, they would be there for support and help with the interest of people they represent, with consent.
heath63
------------- New Year: Hesketh Bank
Feb/March: Red Squirrel
March: lakes
June: Morecambe
Aug: Lake District(not camping camping)
October: Red Squirrel
£53.00 to pay for a carer sounds like the lower rate of Attendance Allowance, if this is the case you can apply for the higher rate of approx £76.00.
Continuing Care is an assesment process with many questions rated high/moderate/low care needs by professional teams involved with the care of the patient IE social workers/health professionals. A person may be deemed as having moderate care needs even if they are unable to weight bear, for example, as this may be routine and not unpredictable. There are so many variables to the assesment and it may include input by carers. The result is a care plan and decision on who pays for it. Usually the higher the needs score, the more likely NHS will foot some or all of the bill, moderate needs means it's more likely Social services will foot the bill and therefore a contribution may well be required from the patient (means tested). Panels meet to decide this and it is sometimes beyond me how they come to their decisions however everything is documented and follows a strict process and criteria.
Help The Aged recently merged with Age Concern to become Age UK - all local offices of Age UK have and Information & Advice Line who are very knowledgable. Some Help the Aged and Age Concerns exist on a local level who also provide Info & Advice.
Spouse has managed to get hold of the woman who contacted her before and is meeting up with her tomorrow evening.
Should imagine terminally ill relative has been well assessed while in hospital by now, so maybe tomorrow Spouse will know more.
Missmally - Spouse phoned Social Services, tried for the higher rate, but that only applied if you needed help overnight.
£76 won't go far, probably wouldn't even pay for one night's help let alone the other 6 nights of the week.(if already charged £10 for every half an hours help.) So Spouse has coped alone, but has themselves suffered broken sleep and illness.
At one stage was told they could have two weeks respite at £1,000.
Hi Coast Walker, Higher rate Attendance Allowance is not only given to people who need overnight help, it depends on diagnosis and need. It is the DWP (Department for Work & Pensions) who administer this and can be applied for without Social Services intervention. It may be worth checking your relative is in receipt of this. It may be that Social Services have carried out a financial assesment and the £53.00 is the contribution SS are willing to contribute towards care. As a general rule (however every case is assessed individually) if someone has over £16,000 in savings and/or receives more than the state pension, for example an extra occupational pension, they will be expected to contribute some or all of the care package costs.
These rules apply to care given at home - community care and do not take into account assetts such as value of house etc. Moving into residential care is a whole different ball game and different rules apply.
I hope the hospital assesment goes well and spouse receives some support and help - carers are entitled to complete a Carers Impact Self Assessment form obtained from Social Services who are obliged to factor in carers needs etc when assessing a care package.
Getting old certainly doesn't come cheap especially in the current economic climate and the stress the extra economic burden puts on people seems wrong .
Age UK offer advice and their National Advice No is: 0800 1696565.
DWP Attendance Allowance HelpLine is: 0845 712 3456
Relative has now had an 'agreeable' assessment with a Social Worker at the Hospital, was told by SW good chance of getting Continuing Care funding, still needs input by Neurologist, but could easily be downgraded by the 'funding team.'
Apparently if Relatives can't get CC funding they only have to pay if they have savings over approx. £46,000 together. (£23.000 for single person.) This does not include their own house because the other relative is still living there. If the second person needs help then the house does get included.
Relatives have dipped out on extra Higher Rate Attendance Allowance as you had mentioned Missmally.
Was told on phone by SS department that you could only get extra help if carers were needed several times overnight. Relative didn't think they could afford to have 'paid carers' in overnight.
Was not told this could actually be the Spouse, not the 'paid for' carers from the agency as they seemed to imply.
Learnt that Terminally ill Spouse's State pension will continue for one year if still in Hospital, so Spouse won't loose out on that much needed income yet.
Also learnt that if you are in receipt of Attendance Allowance you have to tell DWP within 30 days when you go in and out of Hospital.
Getting old isn't just costly it is also very complicated.
Coast walkers - I totally agree with you about it being complicated!!
We also have the little gem of a team coming in during the night to see to Mum's needs (she's not terminally ill as in the situation you describe; this became necessary because both son and I were getting seriously sleep deprived. This needs to be taken into account on behalf of spouse in your case - there is no point in spouse getting ill. This is on trial; but is further complicated in that the contract providers can provide a free regular service here but not on the adjacent mainland. I'm happy to pay for them to come in because the alternate option of having carers come in is £52 per person per night.
However - glad spouse is getting more information and help - to have to bear all the complications as well as caring for a terminally ill loved must be truly awful.
------------- " When I die I don`t want my life to flash before me in an instant, I want it to be a 3 hour epic !"
The Spouse has now joined up to the (brilliant) local Community Transport for the 20 mile round trip up to Hospital and back, it is costing Spouse around £12 a round trip which is good value compared to Taxis and is a door to door service, many local OAP's or Disabled are unaware of it, (Spouse introduced one delighted OAP to it today.)