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