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The UKFibromyalgia Forums • View topic - Fibromyalgia and PIP Question 13 Journeys



Fibromyalgia and PIP Question 13 Journeys

Moderators: perseus, *Lisa*, FluppyPuffy

Fibromyalgia and PIP Question 13 Journeys

Postby philhj » Sat Nov 18, 2017 6:31 pm

Hi all. Thanks for reading. I helped Mrs philhj with her PIP application and she got a 5 year award of 10 points for 20 to 50 metres walking - double hip replacements so she has never recovered ability to walk distance as the FM pain knock on is too great. We will challenge this as I did a diary for her and she only walked 20 or more metres on 4 days out of 28, basically only when she goes to medical appointments she prefers to walk further on those occasions and suffer the knock on pain from the extra muscle work, rather than do the car journey and a wheelchair journey and end up with muscle spasms from stiffness. Also on those occasions we recorded and pointed out the pattern of days of increased muscle pain from a single extended walk. However as she is capable of walking in the 20-50 metre range, and chooses not to because of the knock on impact on subsequent days, its not guaranteed that this argument will prevail. In denying points the assessment report specifically used the argument that she walked to and from the waiting area to assessment room which is 20 metres without becoming unsteady. I will also put forward the arguments that a) if she did walk in the 20-50 range then she would not be able to do so reliably because of the knock on impacts on subsequent occasions/days and b) she only walks atall in her active period in the morning between 9am and 1pm, and then returns to bed for the rest of the day. As she is not able to get up and walk for the majority of the day she cannot be said to walk reliably. But all these arguments might not be accepted so I also want to address the journeys question as another route to getting those 2 additional points.

Mrs Philhj has not been on any journeys other than to medical appointments driven by me, for the last 2 years and only on very rare occasions (a handful of times a year) in the 3 years before that. Those journeys were also driven by me and she would not allow anyone else to drive her because of knock on neck strain / stress flares etc. She would love to go to the shops to choose things, or to the garden centre to get some plants for her beloved garden, but is unable to do so because the journey is intolerable even if I take her. This is the place it gets tricky, because the PIP criteria want to separate the issues of is this due to pain (in which case it doesnt qualify for the mental health questions such as Q13) or is it due to "psychological reasons" and the psychological aspect divides into cognition issues and distress issues. In the application I focussed on the overwhelming distress argument, that the "levels of pain, fatigue, social anxiety, cognitive impairment from 'brain fog' memory problems and communication anxiety, combine to cause her overwhelming psychological distress which prevents her from going out for journeys". Giving all those terms their normal meaning that accurately outlines why she wont go on a journey, its a composite reason from a variety of sources, building into both cognitive imparment and psychological distress. You know what we are talking about here. Mrs P has had fibro diagnosis for 10 years now starting at age 47 and had to stop working 5 years ago. I elaborated the nature of the impacts preventing her taking journeys from a dozen angles, and majored on the simple fact that she now DOES NOT go out on journeys except by medical necessity, and that this is not a matter of preference as she would want to if she was not ill. (This is a very restricted woman now, who does not leave home any more, even to visit neighbours.)

Their argument in denying points is that: "mental state examination showed adequate memory, concentration and cognition. At the assessment you were observed to convey and understand information, you responded appropriately and without prompting. You engaged well with the assessor with adequate eye contact and rapport, you did not appear withdrawn or anxious." The assessment report also states "as she is not being treated for a mental health condition, and does not receive any specialist input for her mental health, and as the MSE showed she was not withdrawn, anxious, tense, sweating or trembling...... she can manage this activity". Well I'm sure I dont need to explain to you why this is irrelevant.

At appeal the fact of her not taking journeys may be enough, but the specific point I am going to put forward for the mandatory review (and any subsequent appeal since MR is likely to fail of course) is as follows:
"DWP stated in their answer to the select committee on which mental health issues might qualify for enhanced mobility. "A person who has chronic fatigue syndrome (CFS) and experiences symptoms including significant fatigue following physical exertion, muscular and joint pain and balance problems, together with psychological difficulties which manifest as depression and panic attacks, could qualify for the enhanced rate under mobility activity 2, or by scoring points on a combination of mobility activity 1 (4 points under descriptor b, for requiring prompting to avoid psychological distress when undertaking any journey) and mobility activity 2 (8 points under descriptor c, for being able to stand and then move unaided more than 20m but no more than 50m). As explained above, Chronic Fatigue Symptom (CFS), also known as myalgic encephalomyelitis (ME), has complex causes which are still not well understood, but which may involve both physical and psychological factors."

Fibromayalgia and CFS are closely related conditions which both have physical and psychological impacts, and the psychological difficulties are part of the condition being monitored and treated and so may not require specific treatment or specialist input. The fact that Mrs philhj avoids situations that would cause her overwhelming psychological distress and so has not needed to pursue separate treatment for it, does not mean that those situations would not cause distress.


Any and all comments on this would be welcome.
I am trying to get this argument sharp because the same argument applies to whether or not she has difficulties with cooking, communicating, understanding reading, engaging socially, and making budgeting decisions. She got zero points for all of those, whereas I know I have to assist her with all of those areas, and most of them she just avoids as they are too much for her.
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Re: Fibromyalgia and PIP Question 13 Journeys

Postby *Lisa* » Sun Nov 19, 2017 6:59 pm

I maybe able to help you with your questions but bare with me as it's a long post and need to go over it to correctly reply.

What I can say for now is that I have found a huge majority of people, even friends of mine have not scored on that question or got little points with the exact same reason from the assessor!

Will return and reply soon
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Re: Fibromyalgia and PIP Question 13 Journeys

Postby *Lisa* » Sun Nov 19, 2017 8:01 pm

On the walking ability and distance, remember it's also about repeatidly and in a reasonly timely manner as well as reliably and safely. For example... (hope this may help)



Mr Bloggs cannot walk and mobilise no more then 50 metres repeatidly, reliably, safely and in a timely manner because of significant pain and exhaustion from the muscle spasms and stiffness caused by fibromyalgia. Even before mobilising Mr Bloggs is in severe pain and is very stiff all over and has restriction in the joints and because of this it makes mobilising very difficult. Even after mobilising Mr Bloggs will take to his bed and rest up for the rest of the day because of such severe pain and stiffness the impact of walking causes. He needs to take pain medication before attempting to walk any distance because of the pain it causes and then afterwards because of the spasms. The exhaustion is overwhelming after walking and needs to lay In bed and rest, this causes such exhaustion that it will take until the next day or two before he is able to get up and mobilise again.

So someone maybe able to walk a certain distance but can they do this repeatidly? Then does it take this person longer to walk a certain distance then someone without disabilities? Can they walk safely? When your muscles and joints are so stiff it's very hard to be able to walk safely. Your prone to tripping, falling and very unsteady. This is because it's like walking through water. Very difficault to walk and it needs a lot of concentration to keep yourself stable. This also causes exhaustion.

There looking at what the persons capabilities are not what they don't want to do because of pain. This tho can come under anxiety as well. No one wants to trigger more pain, although this does not mean they cannot walk a certain distance. So it's explaining why they don't want to walk? What happens? What symptoms? How Mobilsiing impacts and exacerbates the health and for how long and the anxiety it all causes.

DWP are looking at capabilities for the majority of the time. This is 4 days or more in a week. If you can manage even with difficaulties more then this you will loose points. This is because they work out the variation of ones health over a yearly period and it needs to be more then half to significantly gain points.

You mention an active period. Stress that in this active period she still struggles and finds attempting to do anything very difficault needing help, support and asisitance if applicable.

I would also mention when she does go out only for appointments the distress it causes, the exacerbation of health and any anxiety, panic it causes. Mention how stressed she feels before knowing she has to leave the home even before you set out and the exhaustion mentally this impacts on. You may need some example as back up for example...

When Mr Bloggs has to attend an appointment at the doctors he will see if he can get a phone consultation first as going out causes such severe psychological distress because of the pain. When this cannot be achieved and needs to leave the home, the days leading up to the appointment become stressful causing panic at the thought of having to go out. He has sleepless nights and is very restless. On the day he gets in a panic and just leading up to the appointment causes exhaustion from the panic and fear. Then it's explains the after affects... you have to go into the ins and outs starting right at the beginning not just focusing on the actual appointment itself.

Then any examples. mr Bloggs on many occasions has cancelled an appointment due to severe anxiety and missed out on seeing a doctor which has impacted there health as needed urgent treatment etc and never got it resulting in ...... maybe exacasabation of health or not getting anitibiotics to treat an infection etc....

Explain what would happen if she wasn't to get any help and assistance from someone. Why does she need help? What help and assistance is needed etc...

They have made the question really difficault to answer in fact I personally feel it's a no win one! Very hard to get points on it as if your seen in the assessment to be what they say in the way of concentration, don't need prompting etc then this is there excuse to rule out fatigue and exhaustion and in some ways mental help like anxiety and depression.

Now I'm helping a friend with a re consideration at this moment for the exact same question and reasons by assessor! I mentioned the facts that even tho the assor could *see* nothing it doesn't mean that there mind wasn't working overtime in distress and anxiety. No one can see anxiety symptoms and stress. So I mentioned about what was going through there mind at the time of assessment as they can't see that. Any symptoms experienced that they can't see! As they can't argue with that one!

I also stated that they also couldn't see the impact of the stress of the assessment when they got home and the pain and exhaustion going out had caused and for how long it took for them to recover!

You may know some of the above, it's what I can think of right now. Let me know if you need any more help
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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Re: Fibromyalgia and PIP Question 13 Journeys

Postby *Lisa* » Sun Nov 19, 2017 10:01 pm

Things just popping back in my head when going over what you put.

In the MR it's all about disagreeing with there decision on the questions with facts alongside any evidence. Make sure there is nothing else you can find or get in the way of reports and evidence to back up the claims to prove there wrong and to why you disagree. This gains more strength.

Refer all of your MR information is pointed to factual evidence for example... I disagree with this question because.... and then refer what your explaining to a professional report or symptoms that have been written in a report.

Everything needs to be factual and have substantial evidence.

When doing my friends reconsideration the assessor said they probably had walking difficaulties as was on muscle relaxants although the observation for.... just 12 metres was adequate enough for them to do there assessment on! Awarding them only 4 points! I disagreed stating a fact that the muscle relaxants prescribed were that of one which is a controlled drug and only given out in severe circumstances so no probably! It's fact! Then I stated that this person could walk up to 50 metres so scoring them on 12 metres was in my eyes not significant enough! ....

Good luck!
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Re: Fibromyalgia and PIP Question 13 Journeys

Postby philhj » Tue Nov 21, 2017 8:15 pm

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Re: Fibromyalgia and PIP Question 13 Journeys

Postby *Lisa* » Fri Nov 24, 2017 8:45 pm

It's a subject we could chat about for a long time going round in circles with the same conclusions.

I found the MR to people who do not know what they are doing which is most people really bad as you get no information or guidelines to help you.

The diary is good for people like yourself whom are doing it on someone's behalf who do not have any physical or mental disabilities to which you cant understand. I help people and know first hand as have fibro and many other conditions myself making it easier to complete the forms and help with any MR. It's very difficault trying to fIll forms and go through this process when you don't experience what that person is going through each and every day. You may see on the outside but cannot feel on the inside.

You have to start the PIP process from the beginning. I have written a piece on the forum in regards to this. It's organising and planning even before you start form filling. This helps in the long term and with any MR. For example you mention that your GP wouldn't know what's Mrs P is like when going out, that's very true. What I suggest and have done is as soon as you get the form you write down all of the care and mobility needs roughly referring to the questions. This includes distance able to walk, a copy of the diary, and care needs. Send it in for them to put on file so if the DWP need information then the doctor can refer back to what you sent in. I also stress at the bottom that if the GP needs to speak to you In regards to what You have put then don't hesitate to contact you. Doctors don't know what happens in way of care needs etc as when you see them it's to talk about pain and meds etc not to discuss who had to wash your hair as you couldn't lift your arms up etc...

DWP are not asking GP for information now as this costs them. It's another cut within the system but one that can really cause a problem as a lot of people need a GP report to back up information. They also know that GP surgeries will not write you a report so another way for entrapment. Only a few doctors will on their discrescion do a letter but most won't. Some want payement.

Try to have faith. Iv just won my friends money back. Went from high rates DLA indefinite to nothing on PIP!... then the MR gave it ALL back!

You can always PM me if you need any further help.

Good luck and let me know how you get on.
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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Re: Fibromyalgia and PIP Question 13 Journeys

Postby philhj » Fri Nov 24, 2017 10:16 pm

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Re: Fibromyalgia and PIP Question 13 Journeys

Postby *Lisa* » Sun Nov 26, 2017 12:04 am

As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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Re: Fibromyalgia and PIP Question 13 Journeys

Postby philhj » Tue Nov 28, 2017 11:53 pm

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Re: Fibromyalgia and PIP Question 13 Journeys

Postby philhj » Fri Feb 09, 2018 2:08 am

MR no change of course. Put appeal application in mid January, have the bundle, now putting together the appeal submission.

One thing I have found that is very useful is having a sympathetic supporting letter from Mrs P's daughter which is written in detail activity by activity. It gives me an independent document (outside of my own written material) that I can reference in every activity to point out how DWPs dismissal of Mrs P's activity restrictions are contradicted by the facts of how she is affected. You (DWP) say she can communicate fine and her mental state examination is normal, but Mrs P's own daughter says that on the majority of days that she visits Mrs P is unable to engage in more than a few minutes of the simplest conversation even with someone she knows really well etc etc.

I am finding it a lot easier to do the tribunal submission than the original PIP application. With the DWP application you know they are going to avoid every piece of information, so its kind of frustrating trying to build the case. With the tribunal its so much easier because you know they will follow the rules of the system. Hence its easier to say, DWP found that Mrs P can walk 20-50 metres because she walked 20 metres into the assessment room. However the DM has not addressed the 28 day diary submitted in the application which shows she only walked 20 metres on 4 days out of 28, therefore she CANNOT walk 20 metres reliably.

Tribunal says: No more avoiding the application detail Mr DWP :nono:
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Re: Fibromyalgia and PIP Question 13 Journeys

Postby *Lisa* » Fri Feb 09, 2018 6:10 pm

Good luck with the tribunal :goodluck1:
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