PIP 2019 – My World in Pictures

Personal Independence Payment

how disability / condition affects my daily living & mobility
replaces monthly £185 Disability Living Allowance

I got a letter in the post from the DWP out of the blue in July 2019 saying that my Disability Living Allowance was being replaced by Personal Independence for which I had to apply & make a claim. I didn’t know what PIP was but I knew this was going to have a big impact on me. I find speaking on the phone difficult at the best of times so the fact that to register & initiate my PIP claim & start the process entailed a 30 minute detailed phone call with the DWP was more than a hint that this was going to be a long & difficult road ahead. I then received a x40 page claim form in the post which sent my head into a total spin ! I knew I needed key help & support plus plans in place as there was a one month deadline to contend with.

PIP Step 1 = Speak to DWP to register my claim

PIP Step 2 … = Tackle the x40 page form

See my psychiatrist Dr Singh August
brother Martin help
askuswirral.org.uk website research > Benefits > PIP

Section 1 = Health professionals

Section 2 = My health conditions or disability

Section 3 = X15 Questions

Section 4 = What to do next

My disability / conditions

Bipolar Affective Disorder
right knee = ruptured old carbon fibre Anterior Cruciate Ligament
right knee = arthritis

My Personal Key Questions

Q5 Treatments

be clear headed organised to monitor & manage my treatments on a daily basis
dosette box for bipolar & sleeping tablets
use alarm reminder to take them at night / so don’t take too many
otherwise very poor sleep
GP / pharmacist good communication & delivery service
Good day = do knee physiotherapy exercises & pain free
Bad day = when anxious stressed = too painful for knee exercise / forget to order medication
use mood diary to track when becoming unwell = psych x6 weeks
quickly become unwell = withdraw from people & am isolated
family live 60 miles away / no daily support
causes pain & discomfort/emotional distress/tiredness/lack confidence & motivation

Q6 Washing & Bathing

knee = difficult to get in & out of shower safely
don’t have separate walk in shower
restricted to sink washes mostly
fear of slipping/twisting getting in or out of bath
long time because very cautious re fall
use to relax with a bath
occasional confidence for shower
grab rails for shower balance
non slip mat / long handled sponge
need a shower seat
live alone no one to assist me
have lost confidence to bathe
hair wash in sink for safety
good day = have a shower / concentrate & remind not to twist my knee
feel tired after
bad day I don’t do sink washes & neglect my self care

Q9 Communicating verbally

find social situations difficult
especially in noisy or busy places e.g garden centre,cafe,pub,restaurant
can’t concentrate on what’s being said, become anxious, confused & stressed
can’t follow the conversation, head spins/buzzes & quickly get a headache
friends & family fill in the gaps in conversation
just want to go home !
very tired after & feel unwell for a few days after
Psych meetings = Dr Singh repeats questions/ reinforces key points
ask friend to speak on phone on my behalf
difficult to explain what I want or need & hard to process information
if no help = I misunderstand of forget what’s been said
good day = focus & follow what’s being said / speak for myself
bad day = high bipolar phase can’t concentrate & very irritable
bad day = low mood don’t take in what’s being said

Q11 Mixing with other people

bipolar = difficult & stressful to meet & mix with other people
mostly only see people who I know well & understand my mood swings
easily feel anxious in any social situation
need support from family / friends to keep conversation going
only meet others in the morning when feel calmer & fresher
quickly become very tired
sometimes thought of meeting up is overwhelming = cancel & feel guilty
hate bumping randomly into someone from my past =teacher/sport/past pupil
quickly become stressed whether on my own or with someone
good days = meet up & cope with awkward questions
bad days = stressed before then wired then very tired
hard questions = “How are you? or “How’s your knee?”
only have energy for one or two social meet ups per week

Q12 Money decisions

bipolar affects ability to control & understand money issues
finances = constant source of stress, worry & anxiety
leads to poor decision making & impulsive spending
need & receive help from close friend & banking advisor
re budgeting/set up or change £ monthly direct debits/ overdraft limit
easily overspend when stressed so reach my overdraft limit with no backup
good day = feel in control & know what my £ balance is/ what can afford
bad day = don’t think logically & overspend
problems = forget debit card pin number / leave card in machine/forget my purse
sometimes need help in my village shops from staff when confused / anxious
friends help = overview of my finances/annual review/encourages use of cash
& make money last/makes official phonecalls/supports me in meetings/putting credit blocks in place/tackled previous credit card debt
family / friends pay for me in noisy busy places
anything to do with £ money / finances is done in the morning

Q13 Going out

bipolar affects ability to go out
get quickly overwhelmed when out of my house & only go to places I know well & feel safe in my comfort zone
avoid going anywhere unfamiliar
friend to accompany me
practice run on sunday before any new meeting venue = plan route & parking
have had panic attacks on buses & trains in past = lost confidence
knee now impossible to use public transport = nearest bus stop is too far to walk to
try to only go out in the morning avoiding rush hour return by 11.00a.m
good day = drive unaccompanied to local places
avoid driving on motorway
rely on friends car or local taxi = minimise stress levels
have been unable to attend key appointments cos going out too stressful

Q14 Moving around

knee restricts how far & where I walk
bipolar = constant state of alert about the fear of twisting/tripping/ or falling
in house bathroom & bedroom are upstairs = move slowly & cautiously bannister
more stress if have to carry anything upstairs or downstairs = hold bannister
use chairs or tables or walls to steady myself for balance
take extra care re steps/kerbs/uneven surfaces
concentrate in garden re step to grass to border level change
often in pain after
take frequent short breaks
good day = can walk between 50-200 metres & get in & out of car pain free
bad days = only short distance / in pain/ walking stick/alone & isolated
knee swells need 2-3 days to recover
my world is much smaller these days
can’t clean my house properly = need a £cleaner once a fortnight / month
bipolar high phase room floors quickly become cluttered = trip hazards
move slowly & cautiously concentrating wherever I am /whatever I am doing

Q15 Additional Information

my situation more complex because I live alone
no one to rely on & support/help me on a daily basis
my family live in Bolton & only see them a few times a year
bipolar fluctuates depending on stressors & emotional triggers
moods swing between high & low phases
am often overwhelmed
need different types of support & understanding from friends/family
I only go out in the morning for appointments or socially
I find it hard to speak on the phone
am very sensitive to noise, busy places or crowds
constant anxiety & limitations due to knee problems
constant anxiety re £ money issues
my mental health needs managing & monitoring on a daily basis
quickly get tired
am easily overstimulated resulting in confusion & problems concentrating
i find it difficult coping with change
i am overly sensitive & overthink things
I often feel fragile, lonely & isolated
important for me to feel safe both in & out of the house
increasingly difficult for me to keep my house clean& hazard clutter free
my conditions restrict what I can do & what time I do things
mood swings & stress levels often lead to poor decision making
Everything takes longer & face daily difficulties
when unable to get out have done phone consultations with my Psychiatrist & GP
found PIP form caused daily anxiety/poor sleep/felt under pressure re deadline
completing PIP form took a long time & required help from my family & friends

PIP … Step 3 My website / PIP webpage

I needed to make sense of it all so I started working on a PIP webpage for my website to clarify & regain control of my thoughts which were all over the place. This was important so that my family, friends, Psychiatrist & GP were all up to speed at various key stages . It also meant that I didn’t need to keep talking about it which wasn’t doing me any good. When I was ready Geoff my tech guy worked his clever stuff (despite a few hiccups) & I felt better and more supported when I started to share it.

PIP Step 4 … Face to Face Consultation / Assessment Prep & Plan

The initial date of the 15th October at 2.00 p.m. had to be rearranged because Marj (who was coming with me for support) was away on holiday so I rang up to ask for new date which would work better for Marj & me. I was relieved to sort out a morning appointment for Tuesday 29th October and although it was the day before my birthday I needed to get it over with … because I knew I would be stressed & anxious whichever the day was.

Discuss plan with Marj
askuswirral.org webpage / download help sheet
Sunday car trip to find assessment centre
prepare a folder
inform family & friends
Contact Dr Singh re his report
Contact GP Liz re her report
Marj at mine

askuswirral.org.uk / PIP assessment advice

important to prepare
talk about things I have difficulty with
talk about how condition affects you day to day
talk about what a bad day is like
take a copy of your PIP claim form
don’t let the assessor rush you
try not to just say ‘yes’ or ‘no’
always explain how you feel after/impact if repeated in short space of time
download PIP assessment help sheet = tips
assessor will observe/draw opinions/note mental state
take someone with you for support / take notes

askuswirral.org.uk / PIP pdf. Assessment Helpsheet

Take

ID
medication
walking stick
copy of claim form / folder
Psych / GP evidence

tell them everything you can
take your time
go through your claim form
mention anything you didn’t include in claim form

Don’t

exaggerate or lie
do any movements that are too painful
just answer no or yes = say how it makes you feel
expect the assessor to be on your side

The build up to the assessment day wasn’t easy. I knew I had to prepare as much as I could in order to reduce my anxiety & stress levels but it was important to try & pace myself & not overdo it. I settled into a routine of just doing x1 hour PIP prep each morning on webpage & folder work but have the weekend off. I started to share my PIP webpage & felt supported by the feedback from family & friends.

Before that difficult PIP day

Prep for Assessment Anxiety = Approx 60 minutes face to face with healthcare professional

I drove to the PIP IAS assessment centre on two occasions. The first was on a quiet Sunday morning to find the location in Birkenhead & to checkout parking options … relieved that I knew the area quite well. The second time was on a Monday at 9.30 a.m to checkout different busy road car parking options. I parked nearby & went into the centre. I wanted to rehearse going in & speaking to reception before the PIP day in order to reduce some of the anticipated anxiety. I checked that I was booked in for Tuesday 29th October @ 10.15 a.m. I looked at the waiting area which was spacious & modern and felt ok in there. I then asked about the actual Face to Face room size & was reassured that it was a decent size … because I would have found sitting in a small room being relentlessly bombarded by questions very stressful and claustrophobic. So far so good.

I read the IAS booklet again = Understanding your Personal Independence Payment (PIP) assessment. I would be greeted on arrival & asked for proof of identity. I would see a Health Professional who may be male or female and could be a registered nurse ( both general & mental health specialists), physiotherapist, occupational therapist, or a paramedic. It would take around 60 minutes or longer if my condition is more complicated. My appointment may not start on time … either because they are looking through my case or the person before needed some extra time. I also decided that I wanted to know what their background is & what they were writing in their report.

As the assessment day approached I became increasingly unsettled, anxious, agitated & nervous. Recurring hourly thoughts of …

had I prepared as much as I could ?
could I cope with a barrage of questions for an hour ?
just how hard is this going to be for me ?
will I get confused ?
can I keep my confidence ?
will I get overwhelmed ?
will my head get in a spin ?
would I have a meltdown … before ? during ? after ?
would the stress of it all break me ?

Reflections … of a difficult day

At last the big day arrived … It was time to feel the fear but do it anyway because there was a PIP battle to fight. Me & Marj went into reception to show my appointment letter & ID and we sat down. On the opposite wall was the same Isa Van Der Zee picture that is on my wall at home above my desk which we decided was a good omen !

The appointment started on time & was conducted by a female Health Professional registered nurse (pain specialist background). She explained the process emphasising that as I answered each question she would not be looking at me but would be typing her report as I spoke. Marj sat beside me ready to take some notes and so it began … I took a deep breath and somehow managed to speak. It was intense & full on and from the 1st moment I felt under pressure. A barrage of questions quickly followed which left no time to process what I had just said before the next key question crashed in. I did find it very disconcerting when she was typing furiously and not looking at me = zero empathy … also ironic that in a Face to Face meeting she spent very little time looking at my face ! There were various times when I needed to take a breath and asked her to repeat or clarify something which I couldn’t quite understand. I felt rushed at first but soon settled to focus on my appropriate prep sheet to make sure I had said everything I wanted to before I let her move on . This worked well because it gave me time to slow down & focus. My head often went walkabout so I needed to focus and bring it back, also it went spinning off in different directions & at times I got somewhat confused … but I kept digging deep & managed to hold on. The Health Professional then did a cognitive test. Step 1 = mental arithmetic Count back from 90 then subtract 7 = to 83 then quickly repeat subtract 7 = 76 & repeat x3 times more on. Step 2 =what’s todays date ? Step 3 = spell the word world backwards. She then asked me to do a knee mobility test on both knees to see difference between my good left knee & my rubbish right knee . This involved firstly sitting. Step 1 = cross knee over . Step 2 = straight leg lift v her hand resistance. Step 3 = bring knee back to bend under chair. Then knee test moved on to standing. Step 1 = down into squat position. Step 2 = bring up to balance on to tip toes. Step 3 = keep legs straight & bend forwards to try & touch the floor. She then finally said it was over & then came the tears that had been building & just started to flow . Blimey … it was finally over & both she & Marj handed me much needed hankies ! However she then checked & realised she had missed some questions so I had to somehow dig deep & collect my thoughts and focus again to fight yet again ! After 1 hour 25 painful minutes my PIP battle was somehow finally over .

After I was very wired & very tired but managed to text my family & friends to tell them that I had survived the PIP battle. Marj felt it had gone well and I thought I had said everything that I wanted to. I thanked Marj again on behalf of my family for her invaluable help and support . Everybody was so pleased , said well done & were so proud of me. I had tried so hard both in preparing myself & then tackling that Face to face meeting head on. I had given it everything I ‘d got and had done my best.

The DWP texted me the day after to say that they had received the report from the Health Professional & I would be informed within 6 weeks of their decision. What is clear is that my knee issues are affecting my quality of life & I am struggling in lots of different ways = am in a constant state of feeling stressed, anxious, wired and tired. It is a daily vicious circle & I am becoming worn out. Whatever the outcome I need extra support in terms of :

GP = knee increased pain relief / physiotherapy ?
£ cleaner / home help
£ handyman
Psychiatrist = occupational health input re stair rail & bathroom ?
GP = acupuncture for head & neck pain left side ?

After PIP Assessment

It took me weeks to recover from the pressure of that scary rollercoaster ride. I had found the face to face assessment fairly traumatic and felt unwell for many days afterwards. It had almost broken me. I have no words to describe how I felt the after effects of the pressure but here are a few ! Very emotional/ head mashed/shattered/exhausted/knackered/overwhelmed/overtired zzz/fragile/spaced out. I was all talked out & felt bruised and battered but not broken. Most importantly I know I am loved & supported & will somehow get the help I need because solo struggling clearly isn’t working for my mental or physical wellbeing.

Dr Singh

I went to see my psychiatrist Dr Singh the week after for my x6 week review. He understood how hugely stressful it had all been & would take me some time to recover from the trauma and that to share my PIP webpage was important to me & encouraged me to do so step by step so I didn’t need to keep talking about it. He was also very pleased that amidst all the stress I had managed to enjoy my family birthday time. He agreed to contact the Occupational Health team for an assessment of my stairs & bathroom safety and told me well done again !

The 10 Year Declutter

Occupational Therapist Assessment

DWP … The PIP Decision

The PIP decision letter arrived the week before Christmas. It’s impact affected me greatly because after x 6 months of stress, hard work & anxiety I was being awarded zero £ payment at all ! I was shocked, surprised, angry, upset & in disbelief. I raged and I cried & raged & cried some more until I was utterly exhausted.

To be awarded the standard rate for Daily Living the total score needed to be between 8 – 11 points … my score was 6 and zero for Mobility. I was gutted and the loss of significant amount of monthly £ income was a hammer blow.

Preparing food = 2 points . You need prompting from another person to cook or prepare a simple meal
Mixing with other people = 2 points . You need to be prompted by another person to engage with other people
Making budgeting decisions = 2 points . You need prompting or assistance from another person to make complex budgeting decisions

My family and friends support group were all shocked and gutted for me as was my psychiatrist and GP. They all agreed that perhaps a professionally led appeal in 2020 was the right step forward and was was key for now was staying in the moment and trying to focus on the family coming over for Christmas and bringing brother Chris special stereo present for my clutter free upstairs relax / knee physio bedroom.

Wirral Borough Council

workman Tony Minor Works Department
stair rail fitted
evaluation & sign off sheet

Support Group steps so far …

Dr Singh at St Cath’s / The Stein Centre
Martin at mine
Marj at Port Sunlight
Martin at mine
Dr Charles at Devaney Medical Centre
Geoff tech at mine
Phil at mine
Geoff tech PIP webpage live
Kim at Thornton Hall
Marj / Assessment date
Martin / Mark / Claire website feedback
Jackie website feedback
GP Dr Charles report request copy
Psychiatrist Dr Singh request copy
Phil website feedback
Marj at mine
Marj at Face to Face consultation meeting
Post PIP Dr Singh assessment / knee referral to Occupational Therapy
Kim at Thornton Hall
Martin & Mark 10 year declutter
GP Dr Charles knee physiotherapy referral
Vicky @ Yorkshire Bank re temporary increase £ overdraft PIP new £ amount
Sharon Roberts / Occupational Therapist re stairs & bathroom assessment
Stair rail fitted by Wirral Borough Council
Updated GP = no PIP award / she will support PIP appeal = askuswirral
Updated Psychiatrist secretary = no PIP award
Text to Martin / Marj / Phil = no PIP award
Phone consultation with Dr Singh

Timeline … the ongoing PIP Pressure

July 18th DWP letter
July DWP phone call to register PIP claim
August 40 page form How Your Disability/condition affects you
August Dr Singh advice / plan
August Martin help / form posted
September My PIP webpage
October My PIP webpage share
October 3rd Independent Assessment Services (IAS) letter re face to face date
October 5th phone IAS to rearrange Assessment date
October 29th Face to Face Consultation Assessment
October 30th DWP mobile text = received report / decision within x6 weeks
November 7th Dr Singh Post PIP Psych review
November 16th DWP letter = have got all info needed to make PIP decision
December 2nd GP Knee assessment & Physio referral
December 14th DWP letter = decision is not awarded PIP
December 17th Wirral Borough Council stair rail fitted

Process

Letter from DWP / move from £DLA to PIP
phone DWP to start claim procedure
receive PIP claim form in post
Get key help !!! Decide from where ???
PIP form / x4 sections x40pages / draft pencil version
PIP final pen completion / scan key pages
Post claim form
Letter re face to face assessment
Letter re rearranged assessment date
Assessment prep
attend assessment
DWP PIP letter / zero £payment

The P word

pages pain palaver panic paragraphs past pause patience payment peace people pen pencil perplexing personal peruse phone phonecalls photos phrases places plan plants pleased pills points Port Sunlight post positive power possible practical preoccupied prep pressure prioritise private problems process productive progress project proof proofread proud psychiatrist purple put puzzled

The Pain of PIP

completely messed with my head
very unsettling
overwhelmed me
derailed me for weeks
dominated my thoughts
felt under pressure to complete the form deadline
made me ask for help
made me realise how much I was struggling
stressed me out
difficult to prioritise who needed to know what & when
made me think
triggered some very awkward conversations especially about £ money & self care
uncertain timeline very unsettling
forced me to face up to & share how much I was struggling
overthinking overload
needed various plans
needed various types of help
having to handwrite x40 page form
made me push myself too hard for weeks
predictable meltdown
a rollercoaster ride
find the PIP assessment centre in Birkenhead
hard to make sense of it all
support group = don’t judge me … just help me
the stress & strain was a daily energy drain
over & out = all PIPped out

Physical effects of PIP stress

Daily stress headaches & left side neck pain / raised blood pressure / very tiring / chest pains / fast heart rate / confused / irritable / poor disturbed sleep & early morning wide awake

The positives of PIP

= brother Martin / reassess my bipolar balance / focus on what help I need now & from who / support group reconnect & awareness / talk on my phone again / £ monthly benefit payment finalised / p.m. garden potter time / the power of plans / just breathe … just believe / stay in the present moment

To Appeal or not to appeal in 2020 ? … that is the big question

YES = £80 per month standard rate = just £20 per week

No = Can I face it all again daily for another x6 months ? Am I strong enough ? Why put myself through it all again ? Do I really need to ? What do my support group think ? Is it worth all the pain & uncertainty ? What if I get knocked back again ? Is a potential second breakdown worth the risk ? Can the professionals take it all off my shoulders ?

Between July to December 2019 it had a very negative impact on my daily life & wellbeing and caused me x6 months of :

constant Bipolar mood swings
daily stress & anxiety
poor disturbed sleep
£ lack of control
Family & friends catchups dominated by PIP updates
too much self medicating alcohol to numb the pain
very little golf of any sort
neglecting my self care
no positive website work
no energy for new photography projects
little real relaxation
feeling under constant pressure
not cooking or eating healthily
fighting = ongoing fatigue
losing confidence outside my house
no Refreshment Room lunches at all
not reading my kindle at all
becoming increasingly isolated & feeling lonely
PIP constantly dominating my thoughts
I lost myself myself along the way & need help to find my way back

Martin January 2020 … read your PIP update. My understanding is that you have missed the one month appeal deadline, and that if you want to keep going with it you would have to start the whole process again – hopefully not as horrendous as it sounds as it would presumably be a case of tweaking your previous application to try and get 2 extra points. I guess the question to ask is , do you need the £20 per week compared to all the hassle it’s causing you. If you can make budget changes elsewhere to adjust for the loss of it, it’s a no brainer – forget PIP and move on.

Phil January 2020 … I feel the priority should be given to the advice of your expert medical support. The worst case scenario would be conflicting advice from other people without prior experience. Historically there is no doubt that many people have their original assessment overturned on appeal. Having read your webpage I have concluded that, if you can manage financially, an appeal, although justified, may not be worth ‘all the pain and uncertainty’. However, I would be very much guided by Dr Singh.

Jackie January 2020 … Just read your PIP pages & horrendous what you’ve had to go through. I have read of many instances of desperately ill people not getting PIP & appealing … many successful but not always. The points system seems very harsh … no emotional involvement at all. If you appeal, then professional help first is paramount. Who does it though? It will all take time too and will it be worth all the agony for £20 a week? The first step is to nail down the professional help and ask them. You’ve been through so much & now you must leave it to someone who knows these things. Pissy not to get points for your knee but at least you got OT support which helps.

Claire … January 2020 … I agree with what’s been said already and that you should follow the guidance of Dr Singh. I’m just sorry you’ve had to go through it. It’s important to determine to what extent they would be able to assist in an appeal or a new claim, and whether it would be worth it financially. Of course your health and happiness is the most important thing, but I understand that finances play a big part in that.

So … is it an appeal or a new PIP claim ? Which is the best way for me to go forward in 2020 ? Who are the right people to help me ? and How? I think it’s time for us amateurs to step down and my professionals to step up & will take & accept their best advice.

Dr Singh January 2020 Advice

shocked & surprise DWP didn’t contact him re 2019 claim
very surprised that I didn’t get standard rate
I couldn’t have been better prepared & did all I could
any appeal used to be 3 months … now it’s one month
do not start a new claim at this time
not worth all the pain for £20 a week !
not certain a new claim would be successful anyway !
review circumstances in summer / autumn
keep all PIP papers in a box
focus on using energy in a positive way
get a grip of £ finances with Phil help / make some changes to get control
use askuswirral if future claim
get PIP out of my head
concentrate efforts on less stress / better self care & improved quality of life
rest recover & regroup
will take weeks & months to properly recover from
accept PIP 2019 decision & move on
your support group all agree that your health & happiness is more important

from PIP pain … through PIP process … to no £ PIP payment at all … to PIP closure

https://www.askuswirral.org.uk

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