What Price Dignity?

ILF can be applied for if you have a local authority care package of at least £320 per week. Unfortunately, the scheme closed its books to new claimants earlier this year; and, those currently in receipt of this resource have only until 2015 when funding stops - I've not heard of a replacement scheme coming into operation.

The borough in which I live has a set rate for overnight care, around £65 per night. Therefore, the annual bill for this portion of a care package would amount to around £23,660, plus additional statutory costs. 

To have turned down ILF one must assume that Elaine McDonald qualified for the resource. Given that ILF pays up to a maximum of £475 per week (this is for Group 2, people who've applied after April 1993) this would not have fully covered the costs of Ms McDonald's night care needs - add-ons such as Income Tax, NI and other costs would increase the amount.

This case interests me on a couple of levels. First of all there is the inhumane aspect of expecting people to lie in their own bladder or bowel waste for periods of time as high as 12 hours.

Second, I too have a neurogenic bladder, as a result of a head injury, that forces me out of bed sometimes five or six times a night; luckily I have a commode within a short lurch of my bed, though I've also fallen over and at times failed to reach the commode and peed myself. If I fall or pee myself I phone one or other of my PA/carers to come and help - but this means I have to renegotiate their hours for the rest of the week, or week after, in order that they don't exceed their contracted hours.

The commode was given to me instead of night cover I'd requested.

My BB (bladder and bowel) nurse is trying out a range of aids to assist me. My main problem is leakage and wetting myself because I'm not fleet enough of foot to get to the loo on time. So far self-catheterising has failed; also, a sheath with a bag attachment for night time use didn't work (I did as suggested, that is put the sheath under my pillows when I'd used it - two problems with that a.) my pillows stank of pee within a couple of days, and b.) the sheath fell down the back of the bed and stayed there until my PA/carer arrived the next morning.

My BB nurse, and earlier my Urologist, suggested a suprapubic catheter. This is a device surgically fitted which allows the self draining of the bladder. Whenever I can I keep away from intrusive surgery. My life has been one full of doctors prodding, feeling, injecting things and cutting into me; enough is enough, I've reached a stage in life that says 'leave my body alone!'

What the future holds for Elaine McDonald is uncertain, as it is for me. It is a safe bet though, that somewhere along the line the price we'll pay is first the surrender of our dignity followed by illnesses and disease brought about by urinary or faecal contamination.

Well, at least we now have the answer to 'What price dignity'...at the most £22,000, but I suspect there are people out their who have had theirs taken away for a lot less.