Lack of Medical Evidence.

Nasmamu

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

wildlife

@Nasmamu Please don't worry about this. Do you have the medical evidence of CP from years gone by when it was diagnosed? As CP is a lifelong condition with no cure this should be all the evidence you need. They will just take note that you have this condition and move on to how it affects you on a daily basis. I presume you have a lot of further evidence about operations and Crohns? If you want this evidence you can ask the surgery to print it off from your online records. There will be copies of specialists letter sent to your GP from hospital appointments and treatment all held by your surgery and you have a right to have copies of any of these to support your claim. There may be a small charge for these. IMHO you don't need any more evidence of your CP other than the fact you were born with it and it was diagnosed as a child. 

Nasmamu

wildlife said:

@Nasmamu Please don't worry about this. Do you have the medical evidence of CP from years gone by when it was diagnosed? As CP is a lifelong condition with no cure this should be all the evidence you need. They will just take note that you have this condition and move on to how it affects you on a daily basis. I presume you have a lot of further evidence about operations and Crohns? If you want this evidence you can ask the surgery to print it off from your online records. There will be copies of specialists letter sent to your GP from hospital appointments and treatment all held by your surgery and you have a right to have copies of any of these to support your claim. There may be a small charge for these. IMHO you don't need any more evidence of your CP other than the fact you were born with it and it was diagnosed as a child. 

Aww Thank you so much for your reply wildlife, it means so much! Only got the dreaded brown envelope on Monday and have hardly slept a wink with worry since. Thank you for putting me at ease. 

wildlife

@Nasmamu What was in the brown envelope? 

Nasmamu

wildlife it was just the "you're DLA is ending" letter. Was quite a shock after being on DLA since 1992. I knew it was going to happen at some stage but even so when it did the anxiety kicked in straight away. So much so that my crohns flared up and I've been bedridden ever since.  rang them earlier today to go through the telephone stage and am awaiting the form "how your disability affects you" which I need to fill. It's gonna be a long uncertain time now. The evidence situation which you kindly addressed in your earlier reply was my main concern. 

wildlife

@Nasmamu It sounds like you may be struggling to get to an assessment centre in which case you can ask for a home assessment but this may take longer. I also suggest you keep a diary of a typical week which you can use as evidence. This may also be helpful to calm your nerves as writing everything down gets it out in the open. You will probably realize how worthy you are of PIP. Instead of worrying you're not going to get it, use that energy to be determined you are going to be successful. Check out the PIP points system online and go through each activity choosing which one's most apply to you and why. When you fill in your claim form describe each problem you have so that it will be clear which PIP descriptor  best describes your problems. Keep posting on here as you go through the system and you'll get lots of support from people who've already been through it.   

BenefitsTrainingCo

Nasmamu

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

Nasmamu

Thank you for your reply Will. Im ever so grateful you took the time to give me such valuable advice. Bless you 

Nystagmite

I was in the same situation. (different conditions; but because no-one can do anything, everyone has discharged me) This appeared to go against me.

Nasmamu

Nystagmite said:

I was in the same situation. (different conditions; but because no-one can do anything, everyone has discharged me) This appeared to go against me.

I suppose its like Will says above, you've just got to put as much detail in the form as possible. I've heard of stories where even with pages and pages of evidence and prescription lists people are being rejected so it's pot luck either way. Imagine a system where a disabled person has to use the words pot luck to determine if they'll get the help they need...unbelieveable! 

Nasmamu

BenefitsTrainingCo said:

Nasmamu

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

Many Thanks Will. I understand applying for PIP is almost a lottery unfortunately but the information from yourself and wildlife has given me a renewed sense of fight, many a sleepless night worrying about evidence has been suffered. Bless you both!