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We want to hear from you: please tell us about your experience of the online community.

How important is medication and medical evidence ?

wildlife

I've started this discussion to tell you about 2 assessors who were willing to use their common sense instead of sticking rigidly to the rules regarding how assessments should be done. The case is about my adopted son. Having been physically abused by his birth parent he was a quiet, withdrawn child but didn't present with any obvious disability. That is until he got older and started falling behind his peers. He attempted suicide at 14 and was wrongly arrested for a burglary he didn't know anything about at aged 16.

From then on he started with aggressive outbursts and presented with violent even bazaar behaviour. He ended up with a police record with the last incident being 6 years ago when he was arrested on his way to the woods to try out a samari sword. He was being targeted at the time by a gang of youths and this was his way of dealing with it.

He is now 35, has calmed down but the threat of past behaviour is ever present. As regards ESA & PIP the only written evidence of a disability is for LD's resulting from tests he did in Maths and English for work when in the work related group for ESA. He will not engage with Doctors unless forced to do so for benefit purposes or anyone else apart from his Dad who he trusts and who cares for him. We had family businesses so we know what he is like in the work place. We had to watch him all the time and re do his work. That's when he wasn't running off or trying to harm himself.

The main point of this is that, after having 2 good assessors in recent reviews, who were willing to look outside the tick boxes, he is on higher rate daily living and standard rate mobility for PIP and in the support group for ESA. They had a copy of his police record, other evidence of his past behaviour including photos of smashed windows and a few reports from brief appointments with mental health Doctors only suggesting further tests which he refused to do. So, in his case, medication (none), Specialist input (none) or a proper diagnosis were not the deciding factors for recommending high scores.

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Comments

Misscleo

So glad you had the people you did. And thank you for sharing this with us.

wilko

Your your son was, is very lucky to have had such understanding and sympathetic accessors as at a normal medical acessment they would have awarded him a very different award. .

wildlife

@They were normal assessments. Note I missed out the word medical. How many times has it been said on here that PIP is not about the illness or diagnosis but how it affects your daily life. I'm not going to start arguing that my son is as eligible as any other claimant. However just to say in 2011 he had an assessment and came out with zero points because all evidence wasn't available. i did what was necessary for a tribunal and went with him. The panel had already decided before we went in and gave him 48 points. As I've said on another thread it's not for us on a forum to pass comment on anyone's eligibility to benefit.

thespiceman

Hello @wildlife Thank you for sharing with the community.

This is good to hear. I know you had many issues and problems.

I wish you all the success.

I know the assessments can be difficult for every one. I am glad to hear you had understanding assessors.

We are here as a community to be supportive. Anytime.

Always good to talk to you.

Take care.

@thespiceman

wildlife

Thank-you I completely agree. My son was assessed on his inability to look after himself and do what is necessary to live in the modern world. He needs a lot of help with everyday things and prompting to do what little he is able to do for himself. But most of all the assessor listened and believed what she was being told. He would be a danger in the workplace not only to himself but to others as he has no awareness of danger. Physically he has no problems whatsoever which makes his claim based solely on mental health. @wilko your comment was well out of order. You know very little about anyone on here yet you pass judgement on them as if they are at fault for not doing their claim as you would have it. I hope that this forum can get back to being a safe friendly place where people can come for help and support, not to be made to feel they are at fault in some way. I will be leaving Scope for a while as some of the comments are stressing me out which I can well do without. I hope the posters concerned will reflect and think more carefully about what they are putting in writing and how it might affect the more vulnerable in this community.

wilko

@wildlife, I am sorry if I have offended anybody, but reading people’s questions has and dose give the impression that having found the scope forum written a well informed question stated their case, problems then blame the DWP, the acessor the whole benefits system. There is so much information on this site and the internet as a whole and posters could do a lot of leg work and research on their questions, problems before posting on scope to get confirmation and support and advice and opinions. Many question have been answered not once but many times reference how long before I get my award, how long for a hearing, will my benefit be back dated and so on, I know people have trouble using phones and feel intimidated at interviews acessments ect . The biggest problem for the benefit system is mental health it’s not a short term illness, problem but a long term disability which few of us cannot and fail to understand what’s the sufferers are going through. Having meet a few with this problem I never realised the way they think about issues and trying to get into their mind set is not an easy tack even for those who are trained in mental health, this is one area the acessment process has to be addressed and those accessing must be properly trained.

thespiceman

Hello @wildlife Sorry to hear this. That you might be leaving to comments from members who have given insensitive remarks.

As member of the team of community champions we are at all times making sure that this does not happen.

I am sure that the members who post have to be aware of the other members feelings and try to show respect at all times.

Unfortunately this sometimes does not happen.

I am truly sorry you have to leave due to stress. I do understand that and please if I can be supportive. Please get in touch.

Happy to listen anytime.

Your a valued member of our community.

Please take care.

@thespiceman

[Deleted User]

Thank you for sharing, Wildlife.

I was myself awarded PIP enhanced/enhanced in 2014, mainly based on my mental health, hardly any evidence, no meds as I was advised to stop taking them by a psychiatrist.

Now because I've been looking at this forum I'm very very worried about my assessment tomorrow, I have been diagnosed with FM since my last assessment, my mental health is a bit worse, my Son now comes everywhere with me now, I have zero evidence in regards to my FM (how it affects me on a daily basis) and all the mental health stuff is old, I don't take any painkillers for FM because I have swallowing and stomach problems, I also don't fill my own forms in, Welfare Rights filled in my PIP review one. My son however who is also my carer has written a supporting letter stating what he does, why he does it etc. Welfare Rights checked it and said it was good.

I see where Wildlife is coming from, there are too many people who think they are giving good advice coming across as them picking at people and telling them they NEED to have this or they SHOULD do that. As someone with mental health problems, this kind of thing just makes me anxious and worry, it then flares my FM up. I know people are only trying to help but sometimes people sound pretty snide on here. I understand that it's hard for people to understand something they haven't gone through themselves and that it can be hard to speak to people with mental health problems. I think in some situations sending someone a PM and trying to help them that way can help a lot and might make the person feel more at ease.

I personally have severe anxiety (agoraphobia and maybe social anxiety), depression and fibromyalgia. I'm a pretty sensitive person and won't always want to post things or ask questions because I feel like a pain in the bottom and my anxiety prevents me from posting, I also delete what I say pretty often and retype it, I can't tell you how many times that I've rewritten this message so I don't sound like an idiot or confrontational.

I hope I've made some sort of sense, my anxiety is pretty bad today and my thoughts are all over the place.

wildlife

@thespiceman That's how I felt last night. If you want to look out for what has been happening I can give you more information. Speaking generally and not about anyone in particular although I know who is doing it. It's the verbal attacks disguised as advice on new posters making out they're trying to get benefit they're not entitled to. I can't stay if this continues as I feel for the person concerned. Posts saying people aren't understanding the criteria for PIP in direct reply to someone asking for help is uncalled for and should not be happening on a forum that is supposed to help people. None of these requests for help contain enough information for anyone to say they're not disabled enough for PIP. I've been quite open about my feelings when this happens and maybe those concerned will be more sensitive in future. I wouldn't bet on it though as they seem fixed on the idea that it's the claimant who is at fault rather than the assessment provider or DWP. No-one can deny there are problems with the PIP process and most who post here have been caught out by a system not working as it should regardless of how they handled their claim. Thank-you for your kind words.

cristobal

Just a suggestion - is it possible that the forum could be split in two.

One could just be simply for advice, and the other more a 'chat' forum??

[Deleted User]

I think they have a community chat section on the site. Not sure if that's what you meant?

thespiceman

Hello @WF2k Sorry to hear this.. Thank you for sharing. I apologise on behalf of the community.

If you have experienced difficulties or having problems. With people who have posted. I do know that certain insinuations and assumptions do not help .

I have mental health issues myself and my much documented health history. Do understand, care about the community and members.

I do much as I can.

I do have an extensive knowledge of my own illness. Also do recognise that others being made aware of what is out there.

In the form of support and information some guidance.

The big issue I see as a community champion is I see a lot of members struggling with their mental health and other associated problems often related.

Not knowing where to turn to. Being on here finding solace and support. Probably need some guidance where to go to next. What to do.

I was one of those people so many doors closing. So desperate.

I meet so many on this forum do not realise there is a lot of information, support, wellbeing from many sources.

Including charities and welfare. I give if with emotion and feeling, sentiment to help those try to come to terms. With a very difficult situation.

We as a community need to show compassion, empathy and tolerance to those who need some guidance.

One of the other big issues with mental health one solution is not for every one.

I recommend certain charities a particular one because they have an extensive network and good sign posting. Might help to understand the problems and issues you may be having.

Also the this one I do recommend is different. It is with service user in mind. At all times. So if you may be asked for your own in put on meetings, forms the way a branch is run.

They do listen to you.

Use coping methods and strategies, wellbeing and recovery programmes not to only eases but helps you.

I hope if you need to ask for any thing. .

I may add wish all the best for your assessment. Is there anything that we as a community can help you with please ask.

I forget to mention. You can only PM any one when they have got past 25 posts.

If you do wish to PM myself be happy to help and be supportive. Anytime.

Pleasure to meet you.

Take care.

@thespiceman

[Deleted User]

Thank you @thespiceman much appreciated

It's hard work most days, I have tried many different things to help myself both mentally and physically but nothing has worked sadly.

wildlife

@WF2k I too have tried lots of things especially for Agrophobia. It's a total nightmare. At present I'm trying the distraction method. Looking around me and talking to myself about everything I see. But there's a demon in my mind that forces it's way in. I start to think about breathing and that's when things get really bad. Depending how far from home I am or how long till I'm due to get back that's the nightmare. The thing about techniques is that by doing something you know other people don't have to do is acknowledging you have a problem which in a round about way makes it worse. Hope someone can relate to this and maybe you've found something else that works for you. It's my thread so presumably I can change the subject. by the way I'm in our car with hubby driving at the time so maybe that's the problem. Lol x

[Deleted User]

@wildlife Ahh so it's not just me that gets more stressed the further I go from home! I refused to go to a hospital about 5 miles away unless I could get a lift there from a friend of my Mum's, my Son rebooked the appointment, low and behold, it was booked at the hospital closer to us despite my Son asking and them saying no lol. I go out with my Son only, I get way too stressed on my own and he's know when I'm getting agitated, he talks to me and distracts me. Its horrible being like this.

wildlife

Arson, assault, anti social behaviour and possession of a dangerous weapon so that counts? Thank-you it's the first I've heard this mentioned.

twonker

On that basis a criminal record of that type, maybe adding ABH, GBH or Section 20 Wounding is good evidence and is likely to swing the assessor's opinion towards recommending points for PIP?

Well that is news to me also.

thespiceman

Hello @WF2k Thank you for reply. Please can I suggest this mental health charity.

https://www.richmondfellowship.org.uk.

I used before. As I explained in my previous post to you. I should have added that in.

Apologise.

I used them because had basically had used the resources of many organisations including mental health charities.

Doors were closing. Even with Doctors assistance finding that the approach was negative . Not from me but from certain resources and organisations.

To the extreme had to move and found that by doing so had access to other support and additional resources.

Have done do five times in twenty years. Much of it due to my addiction background plus some organisations are local and will not take clientele outside there designated area.

In one instance lived half a mile out side the locality. Of an organisation who should have helped me.

Also may I add one final point. I learnt this the hard way. Do not respond to what ever any organisation or charity advises or offer guidance. They will let you go.

Hope that helps you. Give them a try. No one should be suffering with mental health it is finding what is right for you.

Unfortunately swamped, underfunded and over burden systems are not helping any body. People are not getting the help they need.

I am one example of this.

Pleasure to meet you. If I can help be supportive please contact me. Be happy to. Anytime.

Take care.

@thespiceman

[Deleted User]

Thanks @thespiceman I will have a look. I've just had my assessment which is why I'm only just responding, feeling pretty ill and tired now.

melissahicking2019

Wow sounds alot like my friend...

Other than my friends problems began in infant school and progressed into full blown schizophrenia and depression ect.

Having been physically abused by his birth parent he was a quiet, withdrawn child but didn't present with any obvious disability. That is until he got older and started falling behind his peers. He attempted suicide at 14 and was wrongly arrested for a burglary he didn't know anything about at aged 16.

From then on he started with aggressive outbursts and presented with violent even bazaar behaviour. He ended up with a police record with the last incident being 6 years ago when he was arrested on his way to the woods to try out a samari sword. He was being targeted at the time by a gang of youths and this was his way of dealing with it.

He is now 35, has calmed down but the threat of past behaviour is ever present. As regards ESA & PIP the only written evidence of a disability is for LD's resulting from tests he did in Maths and English for work when in the work related group for ESA. He will not engage with Doctors unless forced to do so for benefit purposes or anyone else apart from his Dad who he trusts and who cares for him. We had family businesses so we know what he is like in the work place. We had to watch him all the time and re do his work. That's when he wasn't running off or trying to harm himself.

Apart from this bit...

No thanks to CAPITA and the Deny With Pleasure crew

The main point of this is that, after having 2 good assessors in recent reviews, who were willing to look outside the tick boxes, he is on higher rate daily living and standard rate mobility for PIP and in the support group for ESA. They had a copy of his police record, other evidence of his past behaviour including photos of smashed windows and a few reports from brief appointments with mental health Doctors only suggesting further tests which he refused to do. So, in his case, medication (none), Specialist input (none) or a proper diagnosis were not the deciding factors for recommending high scores.