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Lack of Medical Evidence.

Hi I'm new to this site/forum so sorry if I've posted this in the wrong category. I'm hoping I can get some advice.
Firstly a bit about myself/disability
I'm a 38yr old who has had CP (Spastic Diplegia) since birth. Was on HR DLA Indefinitely since 1990, Had numerous operations to improve my condition when younger up until approx 12yrs old. Continued physiotherapy/ regular consultations up until approx age of 16yrs and then NOTHING. no help from GP or consultants nothing. It was almost as if suddenly nobody cared. I'd ask GP to refer me and he'd do so extremely reluctantly, I'd go to consultants who would say "there's nothing else we can really do" in the end I just left it and learned to cope with the help of my AMAZING family. To say their lives revolve around me is an understatement. 11yrs ago I was diagnosed with crohns. The treatment for this affected me badly physically and for the past 6yrs I've been in a wheelchair as I feel constant pain as soon as I stand up, can probably move a maximum of 5 metres before desperately need to sit down due to pain or I run the risk of falling over. I still receive regular treatment for crohns as an outpatient and see my consultant gastroenterologist every 3-4 months. My main issue is I haven't seen anyone regards my CP in years! And therefore have scarce medical evidence regarding diagnosis/daily struggles. Had no help from Medical professionals whatsoever since 16-17yrs old. Actually asked for more help via GP approx 5 yrs ago and surprise surprise it fell on deaf ears. I'm now moving onto PIP and am extremely worried about the lack of medical evidence I have for my CP. I work full time with the help of so many people (at home and at work) without DLA/PIP i just will not be able to get to and from work. Public transport is just not safe for me. I'm worried that the lack of medical evidence will jeopardise my chances of PIP at assessment or tribunal stage. Any advice on what I should do to counter this predicament I'm in. Many Thanks for taking the time to read this.
Naser
Firstly a bit about myself/disability
I'm a 38yr old who has had CP (Spastic Diplegia) since birth. Was on HR DLA Indefinitely since 1990, Had numerous operations to improve my condition when younger up until approx 12yrs old. Continued physiotherapy/ regular consultations up until approx age of 16yrs and then NOTHING. no help from GP or consultants nothing. It was almost as if suddenly nobody cared. I'd ask GP to refer me and he'd do so extremely reluctantly, I'd go to consultants who would say "there's nothing else we can really do" in the end I just left it and learned to cope with the help of my AMAZING family. To say their lives revolve around me is an understatement. 11yrs ago I was diagnosed with crohns. The treatment for this affected me badly physically and for the past 6yrs I've been in a wheelchair as I feel constant pain as soon as I stand up, can probably move a maximum of 5 metres before desperately need to sit down due to pain or I run the risk of falling over. I still receive regular treatment for crohns as an outpatient and see my consultant gastroenterologist every 3-4 months. My main issue is I haven't seen anyone regards my CP in years! And therefore have scarce medical evidence regarding diagnosis/daily struggles. Had no help from Medical professionals whatsoever since 16-17yrs old. Actually asked for more help via GP approx 5 yrs ago and surprise surprise it fell on deaf ears. I'm now moving onto PIP and am extremely worried about the lack of medical evidence I have for my CP. I work full time with the help of so many people (at home and at work) without DLA/PIP i just will not be able to get to and from work. Public transport is just not safe for me. I'm worried that the lack of medical evidence will jeopardise my chances of PIP at assessment or tribunal stage. Any advice on what I should do to counter this predicament I'm in. Many Thanks for taking the time to read this.
Naser
Replies
Hi Naser,
I'd just add to the reassurance and advice everyone else has given. Medical evidence isn't everything and it should not be necessary to have a medical professional explain in writing how your condition affects you - that's why there is an assessment process. Although it is often flawed, it is part of the evidence then used by the DWP, as is your PIP2. I've had numerous clients whose GPs simply weren't interested & who had barely a few scribbled lines about their condition from their GP, and they have still been able to get correct awards. (Of course not all GPs are unhelpful, some are fantastic - but you are not alone in your experience).
Wildlife's advice about the diary, and being clear which descriptors apply to you, is also excellent. Remember that if you can't do something without pain, or an activity puts you at risk, then this is relevant. You must be able to do something safely in order to be considered to be able to do it at all, where PIP is concerned!
You could also refer to research/information about how CP usually affects people. This can be useful, especially as you have no way of knowing what type of health professional will assess you on the day. Do consider asking for a home visit if you need one. Accessibility requirements DO apply to PIP assessments even though they don't always make this clear - if you will struggle to get to your assessment, then think about what you would prefer, and do ask questions about accessibility if you opt to go to their centre.
Will