New to Forum

Hello everyone. I am really pleased to belong to this forum and this is a bit about my situation.

I am caring for my adult son (age 32) to a certain degree. His health issues are complex and he has very little support. He lives 3 hours away from me and I do most of his admin and he saves jobs up for me for when i visit him that he finds difficult. He has 3/4 major health issues. He has developed 2 of these in the last 18 months. I previously applied for PIP for him but it was a soul destroying process and he didn’t qualify. 2 of his conditions are not mainstream medical conditions which hasn’t helped as they are poorly understood, even by his own family, despite discussions on it and the obvious impact to him.

He was due to have an operation but it was cancelled due to Covid. Currently his dad (my ex) and I help him with some small budget to make his life easier on top of his standard benefits, but we cant do this for much longer. He is on JSA andI don’t understand with his symptoms how this can be. He looks ‘normal’ physically.

He has been diagnosed with NTOS which cannot be detected on scans and needs an operation by a specialist to ascertain yes he does or no he doesn’t. This is a common feature of NTOS, which involves trapped nerves or blood vessels…This operation was cancelled. His symptoms means he has severe neck and arm pain and can’t raise his hands above his shoulders or use a keyboard/computer or phone very much. If he does it creates a flare up and he has voice recognition technology to help him and as a result I do a lot of his admin. He also has GAD (Generalised anxiety disorder) really as a culmination of trying for 8 years to find out what the nerve pain was (for NTOS this is the average time it takes) now it has got worse and he has started suffering with LPR reflux and an eating disorder due to the cycle of pain resulting in stress eating and reflux. He was recently appointed to a psychiatrist as he was becoming suicidal but they can only offer really strong drugs and not much else.

is there anyone that can support or help with a pip claim? My son told me today he has now lost his voice due to the reflux and can’t use his hands at all due to the pain getting worse and is using his feet to type a message. PIP would give him more options if he was in the system but it will take 4 months at least and there are no guarantees. Can anyone suggest a plan or where I can get expert help with another pip application? and is there any other support available?

Thank you for reading

Did you appeal when the first one was turned down?

Does your son have visits from an occupational therapist. If he doesn’t I would suggest he does. The O/T can the feed back to his G.P. PIP is about what a person can’t do. It’s not about a person’s diagnosis. Obviously. it’s can be easy for individuals if there is a diagnosis. As individuals can use/help with descriptors when explaining their condition.

I suggest as your are quite a distance. That someone more local could be there when an O/T visit’s.

To support a PiP claim the DWP require evidence. Are you able to get evidence from a specialist consultant. The fact he was scheduled for a operation is evidence.

His GAD should also provide enough evidence for an application. Hospital appointments/admissions etc.

Your can contact Citizens advice who will help with form filling.