do people think it better to delay a PIP application a bit and have stronger evidence, or apply now and gather what I can in the time I have? I have early stage MSA. I am being referred to OT, physio and SALT, but don’t clinic findings or clinic letters yet.
Tim.
take advice from the MSA Trust welfare b advisors - extremely helpful and knowledgeable
Agree with Gill. Contact MSA trust ladies.
If you apply and don't get awarded you have to wait a certain amount of time before you reapply. If you do get awarded there are two rates, lower and enhanced. If you're awarded the lower rate you can apply for the enhanced rate when needed. It really depends on what symptoms you have. Best to speak with MSA nurse. There should be organisations that can support you fill the form out, depending on where you live. It's a long form! Plus PIP will give you an assessment over the phone when you make the initial contact with them. Hope that helps!
I agree that the MSA Trust Welfare advisors will give invaluable help. When completing the forms, think about how you are on the worst days, it's not a time to be positive and upgrade your capabilities. Also should you not have the rating you expect, do appeal. My Jackie was first given a ridiculously low assessment and on appeal they said she must have worsened since the initial visit...no they had tried it on and deliberately avoided the proper rating.
Also, don't be afraid to give intimate details of exactly what is done for you. I had to help shower Jackie and they assessed that she could shower herself. I responded with a detailed list of exactly what I did and how demonstrating the need for my help.
Take care, Ian
Hi Tim
Please get in touch with either myself or my colleague Louise Hardy, we'll be very happy to discuss it further with you and can help you with your application form too.
Please get in touch with us via support@msatrust.org.uk
Kind regards
Sam Fitzgerald (Social Welfare Specialist - MSA Trust)
PS. Thanks everyone for the lovely comments. We're always happy to help 🙂
yes, defo speak to Sam at MSA Trust before you do anything about PIP, as her input on my application really helped, I don’t think I’d have been awarded it without her input. It’s a 40 page application that cannot be downloaded to type directly on to, so literally we cut & pasted with scissors ✂️ and glue wat Sam sent us! I was really worried about that but DWP accepted it ok! Sam also will go through any other benefits that you might be eligible for. I wasn’t aware of. Employment Support Allowance for example. If you’re of working age and you’ve given up work earlier due to illness you can claim if your NI is up to date. Sam’s lovely ☺️ and super helpful! Thank you Sam! Even though I have had my diagnosis changed from MSA-c to ILOCA (Idiopathic Late Onset Cerebellar Ataxia), I’ve had to update dwp, but they weren’t that interested! I still hang around on this forum and try to offer help and support if I can! Get a file for any information or letters you will get lots I’m sure! And an address book to keep all medical professionals contacts in. That’s what I did 2 years ago when I was first diagnosed and it’s been invaluable since! Remember, information is key to your future wellbeing I’d say. Good luck 🤞 J.
Hello MSA people,
well, it’s in progress. Louise from the MSA trust is very good at knowing which questions to ask to elucidate the right in information. I think there is enough for PIP. Thank you Louise Hardy for your help to turn my spoken ramblings into ordered prose.
Tim
Gastroparesis as part of MSA
Toilets and drying
Fatigue/lack of energy
Ideas for a birthday present 
