Becoming a carer

MoneySavingMiss95

In just 3 weeks my mum’s mobility has deteriorated from swimming daily, Pilates, walking (albeit slowly) and generally pottering about to almost complete paralysis of her legs and an inability to walk or stand. She is currently in hospital after several falls awaiting an official diagnosis and her case has been referred to our local orthopaedic hospital for their opinion.

If this is our new normal, I will be her carer and I’d like to understand what benefits and support we are entitled toas I will need to purchase transfer equipment and employ help to assist with toilet transfers and to be on hand when I am at work.

She currently receives the lower component of PIP, it was due for review in February but their backlog has meant she is  still waiting to be assessed. I have notified DWP of the change in circumstances.

I do not qualify for carers allowance as my earnings are more than the £150 a week threshold and she is only 63 so wouldn’t qualify for Attendance Allowance.

Our council’s Occupational Health dept has been to measure up and discuss converting the current bathroom to a wet room, install a ramp to the house and widen/flatten the doorways.

I am a homeowner (mortgaged) and she lives with me.

Thank you very much.

Spoonie_Turtle

As you can't claim Carers Allowance, you could look into Universal Credit with the carer element.  Any entitlement will be based on your overall financial situation though, including earnings/savings/property you don't live in and those of a partner if you live with one.
Try a couple of benefits calculators:
https://www.entitledto.co.uk/
https://benefits-calculator.turn2us.org.uk/

Attendance Allowance as you know is only for pensioners, but it is just the pension age version of PIP.  AA does not have the mobility component though so she is not losing out by not being able to claim it. 

Beyond that I can't help (sorry) but this paragraph slightly concerns me:
"as I will need to purchase transfer equipment and employ help to assist with toilet transfers and to be on hand when I am at work."
I am aware social care is in a dire state but one would hope the OT could provide necessary equipment, and that there would be some care plan to be in place for required carers when you are not around.  But others will know more about what's realistically likely to be available.

poppy12345

Does she claim any other benefits? if so, which ones exactly? Does she usually live alone?

When reporting a worsening of condition, you must have experienced those extra difficulties for at least 3 months and expect them to last at least a further 9 months.

You said her review should have been in February, has she received the form to fill in and return? There are backlogs for reviews and some are waiting more than 1 year for a decision on that review. 

p00hsticks

I think the NHS should be working with the adult social services team at your local council to determine what sort of care package if any is felt necessary. 

I can share my experience if ot helps - my recently widowed elderly mother was discharged from hospital last week following a fall and subsequent hip replacement (the difference in my case is that while I am temporarily staying with her t osee her settled I am not able to provide ongoing care as I live at the other end of the country). 

The OT came and measured up the house before she was discharged and we had a commode, toilet frame and wingback chair supplied ready for when she came out, and another is coming this morning to assess if anything else will be useful. We currently have carers coming in four times a day (morning, lunch, teatime and evening) from adult social services, but this is likely to tail off over the next few weeks - I am expecting a review of what care package is felt to be needed no a longer term basis to take place in the next few weeks, and a financial assessment to determine whether mum will have to pay for it. 

I think it is unrealistic of you to hope for someone to be 'on hand' in case your mother needs to go to the toilet unless your mother is prepared to pay privately for someone to come in and stay for the time while you are at work.

MoneySavingMiss95

poppy12345 said:

Does she claim any other benefits? if so, which ones exactly? Does she usually live alone?

When reporting a worsening of condition, you must have experienced those extra difficulties for at least 3 months and expect them to last at least a further 9 months.

You said her review should have been in February, has she received the form to fill in and return? There are backlogs for reviews and some are waiting more than 1 year for a decision on that review. 

No other benefits. She lives with me (I am the homeowner). She’s suffered for well over 10 years with multiple surgeries for several spinal issues, we reported worsening of these symptoms at least 2 years ago but kept getting told to wait and see.

She filled and returned her PIP assessment form back in January but on the previous basis that she was more mobile than she is now, not cartwheels and handstands but able to get up, wash and dress herself and make a basic meal unaided.

MoneySavingMiss95

p00hsticks said:

I think the NHS should be working with the adult social services team at your local council to determine what sort of care package if any is felt necessary. 

I can share my experience if ot helps - my recently widowed elderly mother was discharged from hospital last week following a fall and subsequent hip replacement (the difference in my case is that while I am temporarily staying with her t osee her settled I am not able to provide ongoing care as I live at the other end of the country). 

The OT came and measured up the house before she was discharged and we had a commode, toilet frame and wingback chair supplied ready for when she came out, and another is coming this morning to assess if anything else will be useful. We currently have carers coming in four times a day (morning, lunch, teatime and evening) from adult social services, but this is likely to tail off over the next few weeks - I am expecting a review of what care package is felt to be needed no a longer term basis to take place in the next few weeks, and a financial assessment to determine whether mum will have to pay for it. 

I think it is unrealistic of you to hope for someone to be 'on hand' in case your mother needs to go to the toilet unless your mother is prepared to pay privately for someone to come in and stay for the time while you are at work.

Sorry I didn’t mean that I expect anyone to do anything, I am fully aware that I will have to pay for this but was more enquiring whether we would qualify for any financial assistance to pay for the service.

MissFlossy222

Your mum could also be eligible to claim UC as well as you yourself

poppy12345

Use a benefits calculator to check entitlement to Universal Credit for her. https://www.entitledto.co.uk/benefits-calculator/home/start if she has capital of more than £16,000 she's excluded form claiming. 

If there's entitlement you should report her health condition and provide a fit note and this will start the work capability assessment process off. 

Spoonie_Turtle

MoneySavingMiss95 said:

poppy12345 said:

Does she claim any other benefits? if so, which ones exactly? Does she usually live alone?

When reporting a worsening of condition, you must have experienced those extra difficulties for at least 3 months and expect them to last at least a further 9 months.

You said her review should have been in February, has she received the form to fill in and return? There are backlogs for reviews and some are waiting more than 1 year for a decision on that review. 

She filled and returned her PIP assessment form back in January but on the previous basis that she was more mobile than she is now, not cartwheels and handstands but able to get up, wash and dress herself and make a basic meal unaided.

In your first post you said you'd informed PIP of the change of circumstances - am I interpreting it correctly that you did inform them of her health deterioration, after she returned the review forms?
(Not that it would make a difference just yet, as poppy pointed out it only 'counts' after 3 months, but just wanting to clarify for when it will start to count.)

MoneySavingMiss95

Spoonie_Turtle said:

MoneySavingMiss95 said:

poppy12345 said:

Does she claim any other benefits? if so, which ones exactly? Does she usually live alone?

When reporting a worsening of condition, you must have experienced those extra difficulties for at least 3 months and expect them to last at least a further 9 months.

You said her review should have been in February, has she received the form to fill in and return? There are backlogs for reviews and some are waiting more than 1 year for a decision on that review. 

She filled and returned her PIP assessment form back in January but on the previous basis that she was more mobile than she is now, not cartwheels and handstands but able to get up, wash and dress herself and make a basic meal unaided.

In your first post you said you'd informed PIP of the change of circumstances - am I interpreting it correctly that you did inform them of her health deterioration, after she returned the review forms?
(Not that it would make a difference just yet, as poppy pointed out it only 'counts' after 3 months, but just wanting to clarify for when it will start to count.)

Yes her initial forms noted that she is increasingly struggling from her last review, and when the paralysis happened I called them a couple of weeks ago to say she is now hospitalised. They just asked to be kept updated but couldn’t tell me the progress of the claim/review but they have continued to pay her PIP at least until the review finally happens.

poppy12345

Ok, so you told them she's in hospital, rather than report changes to her health condition. Are you also aware that her PIP will stop if she's in hospital for longer than 28 days. The day she goes in and comes home doesn't count. When she comes out of hospital it will restart again.