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Original poster

Should I get my sisters PIP reviewed?

32 replies

Mercury2702 · 09/08/2024 11:59

Just a bit of a backstory really, I’m 28 and my mum who was my sisters carer died suddenly in February so I took on the care of my sister who is 25.

She has a learning disability and I have been encouraging her independence as much as I can but there’s parts of her award that I don’t think accurately represent her needs. However she does get enhanced rate for living despite scoring 0 in parts I think she should score on. For example toileting needs she scored 0 but I have to help her when it comes to managing her periods and communication she scored 0 on expressing and understanding verbal information but she won’t speak to anyone other than myself and my son really. I’m her appointee for benefits and managing her finances and her third party for her GP and I have to take all her phone calls. She also scored 0 on mixing with other people unaided but won’t mix with others other than us due to anxiety.

im a nurse and we met with another nurse I work with and her stepson who’s autistic and she cried and was sick and said they were lovely but she just got herself into a state due to anxiety.

She also scored 0 in moving around but does get the standard rate of mobility due to needing assistance in planning and following a journey but she has long term pain conditions and is really suffering with pain at present which is stopping her doing stuff like days out where there’s a lot of walking, she has bursitis in her hip, hyper mobility and is suffering pain flare ups that leave her bedridden some days despite her having codeine and amitryptline for pain.

is it worth asking if it could be reviewed or is it best to just leave it alone since she already gets enhanced rate for daily living and standard for mobility? The pain limiting movement has been going on years whilst she was still with my mum and she’s been under physio long term. It’s not about money, I just don’t think it accurately represents her daily life and we had to jump through a few hoops to get her bus pass transferred to the county I’m living in and had to get an extra card from social services that shows she’s registered with them and has a learning disability as here it doesn’t seem she scores enough on the specific section of mobility to be eligible with pip alone but the doctors she’s with now did write her a letter stating she has long term pain conditions as well as anxiety so is unable to travel alone

being a nurse myself, I do realise her original award from 2015 is obviously down to the assessor at the time and know people have a lot of struggles with PIP assessments

OP posts:
BobbyBiscuits · 09/08/2024 12:11

She's already on the highest rate for daily living so the one where she may get more is mobility.
I personally find the interview and forms very distressing. If you don't and do it on her behalf then you could tell them her mobility has got worse, and also the toileting side and communication. If it's her who deals with it and she gets upset it might be better to wait for them to contact you.
I'm stuck in a backlog right now with PIP. I'm already on it and my needs have changed a bit for the worse. But my forms were sent back in April 2023, they told me they have not dealt with it and won't do until at least December this year!
So you could be waiting quite a while.

Bromptotoo · 09/08/2024 12:11

If she's already getting Enhanced Rate for DL I'd leave well alone.

The danger with asking for a review is you can score fewer points and get less money.

LadyKenya · 09/08/2024 12:21

I think that I would personally just wait for them to make contact for a review.

INeedAnotherName · 09/08/2024 12:21

Think about this very carefully. What do you hope to gain from this? You say it's not about the money. It's not about a disabled bus pass or social services. So why?

Remember, her award could go down (or stop) even if she appears worse as it is down to each assessor. Also, does she not have a review date anyway? Most long term PIPs are only awarded for ten years (if you are lucky as most are for less).

Original poster
Mercury2702 · 09/08/2024 12:24

Thank you this is my gut feeling too to just leave it. It isn’t about the money as she’s currently with me even though we’re overcrowded in my 2 bed house and my 8 year old is sleeping with me until we get something sorted out so she’s got plenty of money, I guess it’s just because it doesn’t accurately reflect her needs. She’s just been assessed by social services and going to get a personal assistant for her needs whilst I’m at work

OP posts:
Original poster
Mercury2702 · 09/08/2024 12:26

INeedAnotherName · 09/08/2024 12:21

Think about this very carefully. What do you hope to gain from this? You say it's not about the money. It's not about a disabled bus pass or social services. So why?

Remember, her award could go down (or stop) even if she appears worse as it is down to each assessor. Also, does she not have a review date anyway? Most long term PIPs are only awarded for ten years (if you are lucky as most are for less).

I don’t actually have a clue about review dates, they had to transfer me as her appointee following my mums death in which someone from dwp did a home visit and transferred appointeeship to me but they didn’t mention a review date. This award states it’s 2015 so could it be that it will be due for review next year anyway?

OP posts:
TigerRag · 09/08/2024 12:29

Mercury2702 · 09/08/2024 12:26

I don’t actually have a clue about review dates, they had to transfer me as her appointee following my mums death in which someone from dwp did a home visit and transferred appointeeship to me but they didn’t mention a review date. This award states it’s 2015 so could it be that it will be due for review next year anyway?

Show quote history

It's a maximum of 10 years so it'll be due next year. I seem to remember (unless it's changed because of backlogs) they write to you about a year before

DeadsoulsAngel · 09/08/2024 12:30

Mercury2702 · 09/08/2024 12:26

I don’t actually have a clue about review dates, they had to transfer me as her appointee following my mums death in which someone from dwp did a home visit and transferred appointeeship to me but they didn’t mention a review date. This award states it’s 2015 so could it be that it will be due for review next year anyway?

Show quote history

Mine got extended a couple of times during/due to covid. It might be worth calling them to find out when her review is due, just say you’re checking after taking over as apointee? It’s the truth!

Starlightstarbright3 · 09/08/2024 12:31

I would assume it’s going to be reviewed next year anyway.

i would not risk it . She might or might not get increased mobility but all other assessments are not based on PIP awards .

it honestly is a very stressful process , you have enough to deal with right now

Original poster
Mercury2702 · 09/08/2024 12:35

Oh great thank you so much all

she said my mum used to deal with it so when it’s due for review will it be me they speak to or do you go physically to assessments so I’d accompany her?

you’re right, there’s been so much to deal with so I just haven’t had a clue what happens with all of this stuff, for writing to her with her award with breakdown of points etc it’s all addressed to me on her behalf so I’m guessing it’s because I’m her appointee? Do they also ask for gp consultation proof etc when making their decisions? As we’ve been back and forth since I took on her care in February with the pain flare ups and new medication they’ve tried her on and they’ve stated on her bus pass letter she has GTPS and when I’ve looked that up, it seems to relate to her hip condition

OP posts:
patsy999 · 09/08/2024 12:40

Theres a long wait for reviews. I just rang them to update my claim and they said theres a 53 week back log.
I would keep it as it is for now and wait for them to contact you.

INeedAnotherName · 09/08/2024 12:40

It will be on her PIP award paperwork from 2015. It will state that they have awarded her PIP, broken down into two parts of Living and Mobility and whether each part is enhanced or not. Then it lists how much and when she will receive it. The next paragraph will state how long it's being awarded for. Look for that original letter - it's also the letter you show everyone for proof she needs a disabled bus pass, social services, etc.

I personally think that unless the person has improved in health or desperately needs the extra money (or moves house) you leave PIP well alone until review date. It's too subjective and could easily be taken away. It's also incredibly invasive (as it should be) but also completely humiliating and quite distressing at times.

Original poster
Mercury2702 · 09/08/2024 12:43

INeedAnotherName · 09/08/2024 12:40

It will be on her PIP award paperwork from 2015. It will state that they have awarded her PIP, broken down into two parts of Living and Mobility and whether each part is enhanced or not. Then it lists how much and when she will receive it. The next paragraph will state how long it's being awarded for. Look for that original letter - it's also the letter you show everyone for proof she needs a disabled bus pass, social services, etc.

I personally think that unless the person has improved in health or desperately needs the extra money (or moves house) you leave PIP well alone until review date. It's too subjective and could easily be taken away. It's also incredibly invasive (as it should be) but also completely humiliating and quite distressing at times.

So they sent me a copy of her full award and at the end of the letter it just states she has been awarded both from 2015 for an ongoing period? Doesn’t seem to have an end date or date for review

OP posts:
turkeymuffin · 09/08/2024 12:46

I have no inside knowledge of the system but I think I'd leave well alone if it isn't causing an issue or you need more money?

What's the purpose of getting it reviewed for you?

Original poster
Mercury2702 · 09/08/2024 12:49

turkeymuffin · 09/08/2024 12:46

I have no inside knowledge of the system but I think I'd leave well alone if it isn't causing an issue or you need more money?

What's the purpose of getting it reviewed for you?

It was only because I felt it doesn’t accurately reflect her needs and on the statement it says on the back of your condition changes please let us know and states you must tell them straight away if you need more or less help with daily living or mobility so I thought by not telling them would we get into trouble? Or do many people just wait for reviews

Should I get my sisters PIP reviewed?
OP posts:
TigerRag · 09/08/2024 12:55

Mercury2702 · 09/08/2024 12:43

So they sent me a copy of her full award and at the end of the letter it just states she has been awarded both from 2015 for an ongoing period? Doesn’t seem to have an end date or date for review

Show quote history

I'm sure mine (original award letter) said for an ongoing period and they'll contact me after September 2026.

INeedAnotherName · 09/08/2024 12:56

Is that her original award letter dated IN 2015, as in printed and sent? Look for that one.

Most long term awards are for eight or ten years but every now and then some people got awarded one with no end date aka a lifetime award (very, very rare). Don't poke the bear if that's the case 😂

Morporkia · 09/08/2024 12:57

With higher rate mobility she is entitled to a blue badge. She is able to access the motability scheme which can be used either to get a lease on a car or mobility scooter.
I'm not sure what the difference is monetarily between the mobility award rates, but the awarding of it does bring extra help that can make her (and your) life a little less stressful. Good luck
Edited for appalling typos

Groovee · 09/08/2024 12:59

You could phone and find out when she's due for review. My award stated 2024, but it's been moved to 2025.

Original poster
Mercury2702 · 09/08/2024 13:01

INeedAnotherName · 09/08/2024 12:56

Is that her original award letter dated IN 2015, as in printed and sent? Look for that one.

Most long term awards are for eight or ten years but every now and then some people got awarded one with no end date aka a lifetime award (very, very rare). Don't poke the bear if that's the case 😂

No doesn’t say anything like that and we don’t have the original as my mum was hoarding and had paperwork back to the 80s but we couldn’t find my sisters paperwork so I had to order all new birth certificates for dealing with both my mums affairs and my sisters so I had to ring and request this one so they said it’s a copy of her award

Should I get my sisters PIP reviewed?
Should I get my sisters PIP reviewed?
OP posts:
Octavia64 · 09/08/2024 13:02

Don't poke the bear.

Hopelesslydevoted2Gu · 09/08/2024 13:04

Be aware that there are precise criteria. Some people will need help with something, but not to the degree or in the way that meets the criteria.

For example you say she didn't score anything for toileting but you help when she has her period. I don't think help during her period would qualify.

From the benefits and work website
"how are 'toilet needs' defined for personal independence payment (PIP)?
For the purpose of personal independence payment (PIP), the law states that "toilet needs" means:
getting on and off an unadapted toilet;
evacuating the bladder and bowel; and
cleaning oneself afterwards;"

From memory I think the expressing and understanding verbal information is a very high bar - so somebody would need to be severely impaired to score here.

It's worth googling and finding the scoring criteria and definitions before thinking about appealing.

itsgettingweird · 09/08/2024 13:06

The points are odd!

My ds gets enhanced for living and is autistic as well as a physical disability and I'm often surprised how many of them get no points for communication - considering a diagnosis requires just that - a communication disability 🤦🏼‍♀️

I would leave it for now. However when you get the review paperwork it now just asks for changes in areas you have points. So you can add it there and also add she cannot get out of bed some days etc sue to pain.

If it's an indefinite award there certainly worth knowing looking at the mobility part and asking for a review of that.

Original poster
Mercury2702 · 09/08/2024 13:09

Hopelesslydevoted2Gu · 09/08/2024 13:04

Be aware that there are precise criteria. Some people will need help with something, but not to the degree or in the way that meets the criteria.

For example you say she didn't score anything for toileting but you help when she has her period. I don't think help during her period would qualify.

From the benefits and work website
"how are 'toilet needs' defined for personal independence payment (PIP)?
For the purpose of personal independence payment (PIP), the law states that "toilet needs" means:
getting on and off an unadapted toilet;
evacuating the bladder and bowel; and
cleaning oneself afterwards;"

From memory I think the expressing and understanding verbal information is a very high bar - so somebody would need to be severely impaired to score here.

It's worth googling and finding the scoring criteria and definitions before thinking about appealing.

Great thanks so much for that! Didn’t realise you could find criteria as I did think there is probably a high bar and that it would be subjective on assessors and that’s why I thought it maybe best to just leave as she has an award and that’s the main thing in supporting her needs, as like pointed out she could lose points depending on assessor. It’s all just very new to me which is why I posted as thought others who have dealt with it for longer would be more experienced in this area

OP posts:
itsgettingweird · 09/08/2024 13:12

www.citizensadvice.org.uk/Global/Migrated_Documents/adviceguide/pip-9-table-of-activities-descriptors-and-points.pdf

Here's the descriptors.

Hopefully this should help guide you

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