Started on CARL58 pip form

CARL58 · April 2019

Hi again CARL58 asleep so I've took the time to answer some of these pip questions he'd have no chance answering by himself,he couldn't even write that they'd understand even i can't read his writing,I really feel for him,as he gets really upset trying to get people to understand him because he repeats himself over and over.as to him it's the first time he's said it,if he goes for an assessment there going to need patience with him,be no good them firing questions at hiim he won't grasp what there on about, even i have to be repedative til he grasps what I'm on about,it's like having a deck o f cards stacked against you,but I will get him through it they lack understanding then that's there ignorance, I will make it very clear that he can get abusive and lash out if he feels vunerable and that he has no control over that at all.ive said enough needed to get that of me chest sorry all jen

Ami2301 · April 2019

Hi Jen, it can cause a lot of anxiety and frustration when filling out the forms. No need to apologise, give us a shout if you need any help with the questions

CockneyRebel · April 2019

No worries Jen, we understand that you are doing your best for him. If you mention on the form that Carl is aggresive, abusive or lashes out then you will not get a home assessment

CARL58 · April 2019

Amii2301 & cockneyrebel thanks for that,it's hard as he has complex needs it's not just mental health & disabilities is a whole mixture of problems it's like a hornet's nest,best way I can explain it,if he had the proper help in the first place we may not be in this position today.worst thing for CARL58 is change to a routine especially strangers he gets so stressed it reduces him to tears & he becomes unconsolable,it's what others have done to him,& I'm left to pick up the pieces,not that I mind but to get him in a real state it's unfair to him.makes him unstable for days afterwards and I have to monitor him closely he never asked to be this way it happened,I get upset but I darent show that to him,as I know it would make him worse and honestly totally unfair to him.jen

thespiceman · April 2019

Hello @CARL58 Sorry to hear what is happening to him.

I know we as a community are understanding have time and are supportive.

The issues are complex and difficult for any one to deal with. Especially a good friend. My concern is that some where along the journey. Some one has to try to help the guy.

I do think it is going to take a lot of time and patience to try to give him some guidance and also some support.

I know from my own experiences . Which I have had which are personal to me it took two years and more for me to come to terms with it. Only by the patience and time of support workers.

I would add the issues are that he needs that time and that special professional help to be there as a support. Some one who can be supportive and understand the complexities the mental side and the emotions.

There are people out there as I have used them.

With a lot of professional guidance, advice and support. The difficulty your friend has is to cope with what ever they might say.

Changes, adaptions and any thing of a structure for any one is always finding the way forward. A constant struggle striving to adapt.

I could suggest the charity I used yet is that the answer. Did help and give my life back but that is me.

If you wish me to give the name if you think might help be happy to do so.

Please contact me.

A lot of my concern and care is for you the friend.

You are doing a lot and my concern care is your mental wellbeing.

I am as every one is always here to be supportive, ready to listen.

Wish you well.

Take care.

@thespiceman

CARL58 · April 2019

@thespiceman I don't know what the gp gave him but he's out like alight,she said should last 10 to 12hrs may not sleep all the time,but will keep him quiet she was real nice,she said she's old school I'm sure what she ment by that.she sat down with me explained don't be frightened to the surgery and ask me for me I'll ring you back as soon as I'm available I'll put that on his notes, I'll draft a letter your get that in a few days,put in with his pip form.she even asked what other help do you have me basically, she's not impressed when I told all referrals were Knocked back,she stated it's a lottery if you get other help, because he has complicated needs, they'd rather have 10 easy cases than I complicated case.but she do another referral but this time she wants to be here & have like a meeting,I was surprised she wasn't in a hurry.she read what I'd written even she filled up with tears,you send it in there's alot of his history why he's ill.asked if I was ok just worried about him.maybe something will come of this at last jen

thespiceman · April 2019

Hello @CARL58 Thank you for contacting me . Much appreciated.

Jen how are you doing? Thank you for sharing and caring.

This is what is happening in the health sector. This is all about money, under funding, over burden systems and staff quotas.

To give you a simple outline of the system.

That is the big issue and problem. Having been there. So many times.

Understand the Doctors given medication for him to sleep good this does help.

This is good to hear . Excellent Doctors concerned and caring. Have the right Doctor in your corner will help.

This I am sure will be a lot of reassurance.

Understand also about any surgery going to be anxious, nervous. He will need a lot of support which you are doing.

Hope you are taking care of your self. Your important too remember .

Always happy to hear from you.

Please take care.

@thespiceman

CARL58 · April 2019

@thespiceman I'm fine plodding along, CARL58 is better this morning that sedative really helped.i know Q10 pip reading etc won't score him any points.yes he understands English but I've adapted the Question to show them how his brain injury affects him he can't read at normal pace signs symbols take agood 5mins for him to reckonise it's the way his brain sees thing's,long words are difficult and often doesn't understand the meaning,he will ask me & I do have to explain as for books, newspapers, magazines, he's not. Read any of these in 7yrs , why because the storyline or news doesn't get digested it was making him frustrated and tearful as he couldn't grasp what he was trying to read,we don't care about points for this it's part of his brain injury problem.just needed them to know how his brain sees thing's and operates not how they want.its all part of his problems hope your ok jen

thespiceman · April 2019

Hello @CARL58 Good morning thanks for reply. Good to hear.

Thank you for letting me know how is he is.

The problem is my concern this is important. That he needs the points to get the benefit.

That is main problem with PIP about the points and the descriptors.

It is not helping those with a need or support to get the additional money to maintain the illness or condition or disability.

I understand about the brain injury and additional conditions, illness. It is how DWP perceive this got to try to get this across to them.

Reason I advised that link to that charity. Will stand up for you.

I hope you can find some time to look at that.

I can understand the frustration the anger all of that.

This will hopefully be eased if he gets the counselling the right support.

Thanks for asking about me. Just happy to help.

Remember your doing OK .

Small steps.

Keep in touch.

Take care.

@thespiceman

CARL58 · April 2019

@thespiceman the charity you mentioned is on my list & I will contact them,gp rang me before surgery enquiring about him,,I sense she's really concerned about him, she's going to drop in after morning surgery,plus she's already done the supporting letter,and is refuring him back to each consultant that he was under.thats at least 8,for different parts of is illness,her real concern is he epilepsy, he's having to many seizures. at 60yrs old that isn't good., I'll know more by around 2 this afternoon jen

thespiceman · April 2019

Hello @CARL58 Jen thank you for letting me know.

I know this is not good. I know experiencing so many aspects of pain, heartbreak. The illness and conditions he has.

There are difficulties.

Understand all that.

This is good to hear Doctor is going to visit. This will I hope give him a lot of reassurance.

What is important that we as a community are here to advise, give guidance. Offer what we can.

Only to happy to listen. Be supportive anytime.

Thank you for sharing and caring.

Always in prayers and thoughts.

Take care.

@thespiceman

CARL58 · April 2019

I've been on the phone 40 mins then through all security questions CARL58 struggles to give, gave me permission to speak, requested a 2 week extension,asked me all the problems why, then refused the extension,the attitude was do the best you can, anyone else had the same problem with these people, jen

twonker · April 2019

CARL58 said:

I've been on the phone 40 mins then through all security questions CARL58 struggles to give, gave me permission to speak, requested a 2 week extension,asked me all the problems why, then refused the extension,the attitude was do the best you can, anyone else had the same problem with these people, jen

Strange. I thought having read about it that the DWP will always give a 14 days extension without question. Any further requests for more time could well give rise to be questioned why.

thespiceman · April 2019

Hello @CARL58 Jen sorry that happened. Should be given extension.

May be the Doctor should give the DWP a ring. Might be an answer.

Please can I add do not ever understand how and why. This is ridiculous and maybe ring again with who I suggested The Doctor.

Really feel for you.

Please keep me informed and the community.

Here any time.

Take care.

@thespiceman

poppy123456 · April 2019

I'm very very surprised that an extension of 14 days has been refused here, unless he was already given an extension previously. Extended the time by 14 days isn't usually refused.

If he hasn't previously been given this extension then i'd ring back and speak to someone different.

CARL58 · April 2019

Thanks everyone I'm back on the phone as mentioned in posts im not happy we hadn't had an extension before Jen

thespiceman · April 2019

Hello @CARL58 Jen thank you. Good to hear you. Hope you be successful this time.

Here to a positive outcome. Hope they listen to you

Please let the community know.

@thespiceman

CARL58 · April 2019

Hi all was only ringing 10 mins, before they answered that's a first,got the 2 week extension a nice man actually apologised,we were miss informed I stated that she caused alot of stress & upset, to the person concerned.he noted that so he says.but I'm just glad we got the 2 week extension.thank you all for the sound advice jen

CARL58 · April 2019

@thespiceman GPS visit she was brilliant with him, so soft and understanding,she wants to get the chronic pain from osteoarthritis under better control,that's causing more problems being in pain all time so she's upped the bigM to as high as there allowed and added another painkiller on top,it won't work magic over night but the pain will ease alot in about 5days.she sat and did memory test his long term memory is good,his short term memory is very very poor,she had about 50 card's with pictures on flicked through them,then asked tell me yes when You've seen it before he got 3 out of 50,one more as I know you're exhausted prices I didn't say I've already done that as a game, every thing was a £1 I told her after,she says his brain due to injury is deteriating so she wants him to see a specialist.other than that he's quiet, because he's exhausted jen

CockneyRebel · April 2019

Thanks for the update Jen. It sounds as though you have a great ally in the GP, Hopefully she can help to make Carl more comfortable and her input to the PIP claim will not go amiss either

CARL58 · April 2019

Cockneyrebel sorry if I'm getting nicknames mixed , I'm beginning to feel the pressure now,I'm getting mentally exhausted so I can't imagine how bad it truly is for him,it's very hard and slow filling the form, because he doesn't really understand the questions,I have to be so calm and repeat every single piece of each question,over & over till he gets. some idea, it's affecting him that bad eating is becoming a chore, what goes down comes straight back up,Q15 when we get to it additional information I'm going to use that,i know it's his form I want them to know what I've had to do in 10yrs how he's deteriorated etc open up the bigger picture.ive done his past history upto now,that's sheets of A4.i dare anyone to read it because they'd be in tear's and if there not in tear's there definitely not human,one day I'm going to write a book with everything I know about CARL58 with his permission,to help others because it's so sad and terrible what he's been through and still going through Take care jen

CockneyRebel · April 2019

I am sure that the pressure is getting to you Jen, you have taken on a big responsibility, with little help from what I understand. There should be no problem adding your testamonial to the additional information section.

You must try and make some time for yourself, your health is important to two people.

As always we are here for you, not as good as being there but I hope we are of some comfort

thespiceman · April 2019

Hello @CARL58 Jen thank you for letting me know of todays outcomes. The Doctors Visit and everything else.

We are here to support you as well be a friend ready to listen.

Please ask if we can help with anything. Any questions please ask. Glad to help.

Anytime keep in touch.

Take care.

@thespiceman

CARL58 · April 2019

@thespiceman hi GP she's backed up his illness etc 100%, blah blah,he has a tendancy to have abusive , aggressive outbursts due to ANDROPHOBIA (A FEAR OF ALL MEN) due to abuse,blah blah as there's been a lack of treatment for this phobia,blah blah over many years it's Very difficult to treat now.thats just an outline of her letter, she goes on for ages,the only coping mechanism he has is to avoid these situations, as the amount of distress it causes him,puts him at risk and others,she's out lined each part of his illness.not like most other GPS lucky if you get a paragraph.shes been very thorough,take care jen

thespiceman · April 2019

Hello @CARL58 Jen thank you for sharing.

Seems the Doctor done the amazing thing . Done this report. Hopefully that will help him enormously.

Get the benefit and support he needs.

Please keep in touch just let any of the community know. How things are progressing.

Please take care.

@thespiceman

Started on CARL58 pip form

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