Help with care funding

[Texaskingy]

Hi. My mum was diagnosed with PSP three years ago. We believe she had it for at least 2 years previous to her diagnosis. My dad was her main carer but he died a year ago and since then mum has been living alone at home with me caring for her daily and carers going in. The falls have been increasing as soon as I leave or the carers are not there. Mainly due to mum not being able to transfer to the commode from either her bed or sofa. She had 16 falls last month. The last fall hospitalised her as she had several bleeds on the brain. She is now in respite care as it is unsafe for her to go home. We can never predict when she needs the toilet. I have looked around a lot of care homes. All seem to be full of very elderly people or people with advanced dementia. Mum is only 61 and really it is just her mobility holding her back. She can still feed herself and get dressed with only a little assistance. She needs help with personal care as she can’t stand safely to wash by herself.basically mum can not get up by her self, or do any thing due to her lack of balance or mobility. For example if the carer forgets to put the phone by her when she leaves, mum couldn’t get up to get the phone or if she dropped something on the floor. Luckily I have put in cameras so if I ring and she doesn’t pick up I can see why. Also when she falls I can see how and see if she is ok? The respite home is awful and I hate leaving her there. I am now trying to get mum back to her bungalow but with 24h live in care. This is very expensive and as a family we are still £200 a week short on what we need to get mum home. Does anyone know of an extra funding I can apply for or anything that can help mum get home as I think putting my mum at only 61 into a care home environment wouldn’t be a suitable option and would really be detrimental to her health. I have applied for chc funding but I not holding up much hope. Any advice would be very much appreciated. Karen.

[JR61]

Hi, have you applied for Carer’s Allowance and/or Attendance Allowance, reduction in Council Tax due to mental impairment, also water rates can be assessed for a single occupant if you don’t have a water meter etc. Check out:-

ageuk.org.uk

I would advise you to have a Carer’s assessment for yourself if you haven’t already done so and get Adult Social Services involved also your Neuro Matron, who is the go to person, to co-ordinate the multi disciplinary team that should be involved in your mum’s care.

I know that many have a struggle to obtain CHC funding, we managed to get Fast Track CHC for my dad when he was admitted to hospital with swallowing difficulties, as this was a clear nursing need and not social care. I refused to let him be discharged from hospital until I found a place in a good nursing home. The hospital had tried to send him to an EMI home which I visited and as you say they are not the place for PSP patients.

If you haven’t done so already I would advise getting an LPA sorted out, which will help you to help your mum and be her voice, conversations regarding an advance care plan etc so your mum can make sure he wishes are adhered to. The PSPA can advise too. All the best, JR61 x

[Kevin_1]

Hi

I'm so in agreement with Jr61.

She can claim ESA, but in the 'unfit for work stream' . Even if her savings mean she gets no actual cash she will get her National Insurance paid - but most of all it will give her access to PIP - which could be worth £140.00 per week.

Ask the GP for a referral to Continuing Health Care - If you get it it will pay for all of her care needs. Come back to the site and I will give you leads to steer you through it. It really has to be fought for (generally) so being up to speed on their scoring and being at the assessment makes a huge difference. If you don't get CHC they should put you straight through to Social Care run by Social Services - You will get the same package there, but it's means tested.

It can all be a bit overwhelming at first - but its all very do-able. Just keep coming back to the forum if you need to - folk will help.

PSP often brigs with it an inability to assess risk. People will try to things they just can't do... Hence all of the falls. So they have to be watched closely with an eye, sometimes, for split second intervention. Generally one carer cannot manage the level of work required. as part of a CHC application she will get a full needs assessment with a risk assessment as well. They work that up into a care plan. If nothing else you should get sound professional guidance on how to meet her needs.

I do hope this helps a little.

Best to you both

Kevin

[Texaskingy in reply to Kevin_1]

Thankyou. This was very helpful!