2014 – 2015 ARMA Benefits Survey

Summary

This survey was conducted by the Arthritis and Musculoskeletal Alliance (ARMA) and is aimed at those with musculoskeletal conditions (MSK) over the age of 16. The survey was open from 3 December 2014 and closed on 31 January 2015. It was conducted using Survey Monkey and distributed to people with MSK via organisations which are members of ARMA.

There were 502 respondents in total. 12 were disqualified immediately as they did not have an MSK or were not over 16. The total number to qualify for the survey was 490.

Overall the survey showed that most people found the process of claiming benefits to be stressful and difficult. Assessors appear to have limited knowledge of MSK and the affect that they have on people’s day to day life.

This survey will be used to present key messages about the process and the outcomes to government officials.

Key messages

Completing the forms causes stress and anxiety for anyone living with a musculoskeletal condition (MSK).

The forms do not allow for full explanation of living with a MSK and the impact that it has on a person’s life.

Work Capability Assessments (WCA) are not always necessary when a large amount of information and supporting documentation from health professionals has been submitted.

Conditions are not understood at the WCA, particularly for fluctuating conditions which can change from day to day.

The lack of understanding from assessors of the varying conditions causes applicants to feel fraudulent. The lack of understanding of fluctuating conditions leaves applicants feeling that they will only receive

their benefits when their condition has deteriorated to a stage where they will no longer have their ‘good days’.

Health is adversely affected by the process – both completing the forms and attending WCA. In many cases the exam causes physical pain.

The length of time the processes take can cause extreme financial hardship. Decisions are not explained and benefits often stopped without warning, leaving those affected

destitute. Few are given information regarding appealing the decision. Few are given the help that they need to get back to work having been found fit for work.

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Full survey results & analysis

General information

Respondents were asked to complete a serious of questions about themselves and their condition.

Age

16 – 24 1.80%25 – 34 9.38%35 – 44 19.76%45 – 54 35.33%55 – 64 26.95%65 or over 6.79%

Gender

Male 22.04%Female 77.96%

Where in the UK do you live?

South East England 15.79%South West England 10.53%London 5.47%North East England 6.88%North West England 14.57%Yorkshire & Humberside 7.69%East of England 8.91%East Midlands 5.47%West Midlands 8.50%Scotland 10.32%Wales 4.45%Northern Ireland 1.42%

Ethnicity

White British 90.46%White Irish 2.89%Other white background 1.19%Mixed white & black 0.08%Mixed white & AsianAsian or Asian British 0.20%Black or Black British 0.80%Chinese or Chinese British 0.60%Other ethnic group 2.39%

Other ethnic groups named were Scottish, Arab Asian, Mixed Asian & Black, Indian, Indian British & English.

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Condition(s)

Respondents were asked to select all the conditions that they have from a list.

Ankylosing spondylitis 25.47%Back pain 33.95%Fibromyalgia 51.55%Hypermobility 7.45%Lupus 0.83%Osteoarthritis 28.36%Osteoporosis 7.00%Psoriatic arthritis 4.97%Repetitive strain injury 5.8%Rheumatoid arthritis 27.54%Scleroderma 1.24%Sjögren's syndrome 1.04%Vasculitis 1.45%Other (please specify) 8.28%

Other conditions included other MSK conditions (including spinal stenosis, costochronditis, degenerative discs, gout, tendonitis, Ehlers-Danlos syndrome, sciatica), non MSK conditions (for example multiple sclerosis, chronic fatigue syndrome, postural tachycardia syndrome) and conditions associated with MSK conditions (irritable bowel syndrome, uveitis, depression, Crohn’s disease).

Time since diagnosis

Less than 1 year 10.17%1 to 5 years 34.65%6 to 10 years 19.92%11 to 20 years 21.58%More than 20 years 13.28%Don’t know/can’t remember 0.41%

Condition at the moment

Mild 6.86%Moderate 47.41%Severe 43.66%Don’t know 2.08%

Condition over time

Stay the same 4.38%Get better 0.42%Get worse 35.00%Fluctuate 51.88%Don’t know 8.33%

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Current employmentMore than half of people with an MSK condition are unable to work due to ill health (54%).

Full time 15.73%Part time 11.39%Full time education 1.66%Full time parent 2.28%Retired 12.01%Unable to work due to ill health 54.24%Other (please specify) 2.48%

Other employment status included volunteer and self employed (work when needed).

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Employment and Support Allowance (ESA)

Have you ever applied for ESA?

Yes (not previously on incapacity benefit) 46.93%Yes (reassessed from incapacity benefit) 33.33%No 19.74%

Did you previously have an indefinite award for Incapacity Benefit?

Yes 31.53%No 68.47%

When did you apply for ESA?

2008 3.24%2009 5.95%2010 11.89%2011 11.35%2012 28.11%2013 22.16%2014 17.30%

How did you find completing the ESA application form?

Nearly 4 out of 5 of people found completing the form very difficult (31.89%) or quite difficult (47.57%) with the rest finding it quite easy (17.84%) or very easy (2.70%).

Respondents were then asked to give reasons for their answer. Many people found the questions were too complicated or too much information was required and that the form was too long and repetitive, causing distress:

“Long, repetitive and asking irrelevant questions and I had to pay for support evidence”

“Very long, overcomplicated and asks us for information better required from medical professionals”

“Tiresome contradictions”

“I felt there were a lot of the same questions that were written to make you give answers that were not necessarily correct. They felt as if they were designed to trip you up! And make out you were not telling the truth about how being unwell impacts on your life”

“Hard to find ways of explaining my illness the way the questions were worded”

“Questions seem to be set to catch me out. They ask the same questions but in different ways”

“Too long. Soul destroying to have to keep answering the same thing 100 different ways”

“Contradictions of questions, complicated and huge”“A lot of the questions they asked were the same just worded differently”

“Confusion over the meanings of questions, misleading information requested”

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“Hard to find ways of explaining my illness the way the questions were worded”Respondents felt that complex and fluctuating conditions were not considered when the form was drafted, nor was the effect that a condition may have on someone’s ability to complete the form, in addition to the stress and anxiety that it may cause:

“Most questions do not allow extreme variations of my illness, forms are long and tedious so I have to take rest periods, and difficulty writing with painful hands. Impaired concentration is pushed to the limits which can only lead to more pain, frustration and fatigue”

“It was difficult due to the fluctuation of symptoms and I did not know much about fibromyalgia or rheumatoid arthritis”

“It’s very depressing and I have psoriatic arthritis in my hands which makes writing painful and difficult”

“The form itself was ok to complete but I have to fill it in a little bit each day as I cannot write for long periods due to arthritis”

“Very hard to answer for a fluctuating condition”“I find it difficult to put into words how I feel each day”

“I find filling forms difficult as I have a problem taking in information and understanding and remembering it”

“It doesn’t take into account that conditions fluctuate, if you can do something one day it seems you can do it all the time and you lose points”

“It was very long and repetitive. I also have trouble concentrating”

“It’s very difficult to equate how bad the pain can be on a day to day basis and then put that into words”

“A lot of the questions didn’t leave room for complex answers. My conditions require complex explanations to make sense. It was very long and draining. “

“I have difficulty holding a pen, the form was very long and I find it difficult to concentrate, due to depression and anxiety. I have memory problems and struggle to find the right words”

“Because fibromyalgia is so unpredictable ‘cause one day you will be fine and the next you’re in total agony and can do nothing. The more stressed you get the more pain you experience and the more pain you experience the less sleep you get and the effect this has on your mental health is devastating... Most of the questions are inadequate and irrelevant. This also affects my anxiety and I can become quite paranoid. My memory also suffers”

“So much detailed information needed. Support needed from GP, letters from family. Also do they take into consideration pain? Repeatability? I cannot write very well, and mental stress going over my inabilities led to further depression.”

“Others found the form to be straightforward:”

“The form is pretty straight forward and it comes with information on how to fill it out properly and what evidence one needs”

“I was just honest about my ailments and how they affected me”

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“I don’t remember it being a concern”

If you were given support to complete the claim form, who provided it?

Family or friend 32.29%Care or support worker 5.21%Welfare rights or benefits advisor 19.27%Department for Work and Pensions (over the phone) 2.07%Department for Work and Pensions (home visit) 0.52%Can’t remember 6.77%Not applicable 35.42%Other 4.66%

Did you include any information or evidence about your condition or disability, such as information from a health or social care professional, when you returned the form?

Yes 60.32%No 22.22%Don’t know/ can’t remember 17.46%

To what extent do you agree with the following statement: ‘I felt I was able to fully explain the impact of my condition on all aspects of my life through the claim form’?The majority - three out of five respondents - either replied strongly disagree (27.96%) or disagree (33.87%).

Strongly disagree 27.96%Disagree 33.87%Neither agree nor disagree 18.28%Agree 17.20% Strongly disagree 2.69%

Respondents were asked to give reasons for their answer.

Some of the more negative experiences with the form:

“Way too much to write it all”

“Condition changes everyday”

“Don’t think the questions addressed all my problems”

“Just couldn’t get my point across clearly”

“Because so much is emotional and incredibly difficult to express in words to a stranger/assessor. When you have had a disability for 20+ years it’s difficult to remember what was ‘normal’ for you before you had it. It’s like pain, my relationship with pain and how I perceive it is totally different to someone else. I cope because I have no choice. I walk slowly with pain because I have no choice. I want to live”

“I found it difficult to explain how my conditions fluctuate from day to day”

“Questions were too rigid (black and white) but my illness is not like that”

“The space to write down the full effect ion fair/good days as opposed to the worst day ever, when you wished you could die, you’re stuck in your bed and can’t move & cry because you couldn’t get to the

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bathroom and soil yourself. The soul-destroying embarrassment, what really goes on inside your head, the depression & anxiety…”

“Because I am in so much pain and can’t look after my child as I’m a danger, it affects my life to the extent most days are spent in bed and have so many painkillers I don’t feel mentally stable. I am affected so badly with this I can’t explain how hard it makes my life”

“Questions didn’t cover a condition that flares up”

“They didn’t understand AS, I was found fit for work once as the doctor said AS was lower back pain and not serious, it was overturned after 3 months, but the mental damage was done”

“The questions don’t allow for the complex answers needed to give a true and full picture of my condition and the daily impact it has”“They seemed to dismiss the full impact of this illness, not just pain – fatigue, depression etc.”

“It can’t just be explained in a box. It’s far too complex”

Others did not find it so difficult:

“There was scope for going into detail. One could attach extra pages to explain situation fully”

“The new option of ‘varies’ is a big help and it does ask for more explanation if you feel it is necessary”

“It was pretty thorough”

“I was able to write about my condition on extra pieces of paper and was able to think about all my conditions and their effects which were backed by my GP.”

The Work Capability Assessment (WCA) is the assessment for ESA which is often conducted via a face to face consultation. Have you had a face to face WCA?

Yes 58.38%No 41.62%

How many face to face WCAs have you had?

None 37.44%One 33.85%Two 14.87%More than two 13.85%

Where did the assessment take place?

Assessment centre 72.32%Home 4.40%Not applicable 23.27%

When you went to your assessment centre…

Was it fully accessible?Yes 57.78%No 18.18%

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Don’t know 24.03%

Was your appointment on time?Yes 35.95%No 39.87%Don’t know 24.18%

Were you given the information you needed in your preferred format?Yes 52.98%No 12.58%Don’t know 34.44%

Were you made aware of the option to request a home visit?Yes 7.84%No 68.63%Don’t know 23.53%

Were you made aware that someone could attend the assessment centre with you?Yes 53.90%No 22.73%Don’t know 23.38%

To what extent do you agree with the following statement about the assessment:This question highlighted the issues around a lack of understanding of fluctuating and changing conditions.

They understood my condition.Strongly disagree 38.16%Disagree 21.05 % Neither agree nor disagree 28.29%Agree 9.21 %Strongly agree 3.29%

They asked about all the aspects of my condition that affect my ability to work.Strongly disagree 32.24%Disagree 19.74% Neither agree nor disagree 28.29%Agree 15.79%Strongly agree 3.95%

They took into account how my symptoms can change or fluctuate.Strongly disagree 33.11%Disagree 26.49% Neither agree nor disagree 28.48%Agree 9.27%Strongly agree 2.65%

They took the right amount of time to communicate effectively with me.Strongly disagree 26.67%Disagree 15.33% Neither agree nor disagree 36.00%Agree 19.33%Strongly agree 2.67%

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They treated me with respect.Strongly disagree 14.57%Disagree 15.23% Neither agree nor disagree 37.09%Agree 29.80%Strongly agree 3.31%

My health was adversely affected in the days that followed the assessment.Strongly disagree 8.67%Disagree 6.00% Neither agree nor disagree 22.00%Agree 23.33%Strongly agree 40.00%

If you had a physical examination were you asked for your consent before it took place?

Yes 30.86%No 15.43%Don’t know 14.29%Not applicable 39.43%

Regarding your physical examination, to what extent do you agree with the following statements:Highlighted by this question was that the physical exam causes pain, is inappropriate and is not thorough enough in some circumstances.

The physical examination caused me no physical painStrongly disagree 38.03%Disagree 28.17% Neither agree nor disagree 26.76%Agree 5.63%Strongly agree 1.41%

The physical examination was appropriate in the context of my assessmentStrongly disagree 26.95%Disagree 21.99% Neither agree nor disagree 41.84%Agree 9.22%Strongly agree 0.00%

The physical examination was thorough:Strongly disagree 30.99%Disagree 20.42% Neither agree nor disagree 38.03%Agree 8.45%Strongly agree 2.11%

Have you seen a copy of the report from your assessment?

Yes 33.55%No 66.45%

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Did you feel the report was an accurate reflection of the answers you gave in your assessment?

Yes 5.33%No 36.00%Can’t tell 58.67%

Did you appeal the outcome of your application?

Yes 43.71%No, I decided not to 34.44%No, I didn’t know I could 21.85%

Were you dissuaded to appeal by government or ESA officials?

Yes 11.26%No 60.26%Don’t know 28.48%

Were you signposted to organisations who might able to support you through the appeal?

Yes 11.11%No 88.89%

What was the final outcome of your application?

Granted ESA – support group 49.71%Granted ESA – work related activity group 21.71%Granted ESA – don’t know which group 7.43%Denied ESA – found fit for work 10.86%Don’t know yet 10.29%

What type of ESA were you awarded?

Income related 33.33%Contributory 29.38%Don’t know 37.29%

What prognosis were you given for a likely return to work?

3 months 2.31%6 months 1.73%12 months 2.89%18 months 1.73%Within 2 years 4.05%In the longer term 20.23%Don’t know 67.05%

Do you feel you have received sufficient support to help you get back to work?

Yes 26.67%No 73.33%

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Respondents were asked to give further comments about the process.The process was very stressful for many, both emotionally and financially:

“It was very stressful and took a long time to receive the correct benefit amount. It took over a year for the whole process to be dealt with correctly and this severely affected my mental health as I had no financial support from anyone else”

“I was originally refused my ESA, and had my benefit stopped for 8weeks as I was deemed fit to work. I asked for them to re-evaluate my case and thankfully was granted full ESA. This whole episode caused me no end of pain and suffering, I was bed ridden for weeks, and I ended up with a massive flare. Worrying about how I was to pay my bills, how I was going to get a job if forced to, who would employ me, my sickness record with my previous employer would go against me, my doctor was refusing to sign me fit to work. Just more stress and worry I didn't need at the time.”

“There is no possibility of me being able to work in the future, and the constant assessments are very stressful. I feel the whole process is degrading; they are not there to help people back to work, but to get them off benefits even when they are in genuine need. My report was not accurate, and contained some blatant lies about what I did and what was said. I scored no points for mental health issues in spite of crying and shaking through whole of assessment and becoming extremely distressed. The report said I was able to make eye contact, which meant I wasn't depressed. I am taking antidepressants and seeing a mental health worker on a regular basis (which I have them proof of) yet they basically said I had no mental health problems. It was a totally distressing process, and then having to appeal the decision which put me in work related group just added to the stress. I have to use a wheelchair (which I need someone to push as cannot propel myself) and suffer panic attacks and need someone with me when I go out, yet they thought I should be able to get to job centre for interviews. I appealed and they said I would have to go to tribunal, when I wrote and said I was unable to attend on my own and felt that I met criteria for support group, the tribunal was quickly cancelled and I was awarded support group. I feel the whole system is made difficult in order to get people to give up their claim, it is so stressful and not fair on genuine.”

“Awaiting tribunal, first one adjourned. Assessment rate will be over, more than 12 months before this. I’m going to end up destitute. Mandatory reconsideration doubles work load for applicant, and is very stressful”

Some respondents felt that they were treated as if they were committing fraud:

“Face to face doctor had no idea about my condition and totally ignored everything I said, was treated as though I was putting it on”

“People with disabilities should never be made to feel like they are liars from the offset. They should be treated with respect.”

Many had their health affected:

“I was told I had to go to assessment centre. This would have involved two taxi rides, two bus journeys each way. There would then be a very steep slope to get about 30 yards to centre. It was a couple of days before Christmas and snow on the ground. My son had to drive 260 miles to pick me up and take me as I could not make the trip alone, even though he had to almost drag me up the slope. When we got in the lady said I should have asked for a home assessment. We explained that I had done and it had been refused. She said we should definitely complain. We never did... The whole thing just exhausted me. I spent all of Christmas and New Year in pain and in bed.”

“If I am able to provide (as I did) reports by my specialists and GP regarding my incapacity of work, why do I still have to see an ESA person? Who is better qualified to decide if I am able to work or not than medical

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practitioners? My doctors said very clearly that I can’t work any longer and I have given up work recently because of it.”

“Having received incapacity benefit Incapacity benefit for the previous 8 years I was awarded ESA – work related activity group. I attended all work related activity interviews and my advisor questioned me as to why I had not been places in the support group, but did not explain the difference or how I should have appealed the decision. After 365 days my ESA has stopped, & I don’t know what to do now.”

“WCA took place without my attendance. Declared fit without an examination by a nurse who obviously had little or no understanding of ankylosing spondylitis”

“It takes too long to be assessed by ATOS. I am still waiting after 11 months. Life is suspended until assessment comes through”

“When I’ve had to reapply for any benefit, be it ESA or DLA, I’ve had to have a medical every time! Surely they know from my previous report that my illness will never get better and I suffer more days when I can’t even get dressed or have to stay in bed due to pain & exhaustion. It becomes like you’re being targeted all the time. I get so low as I used o be so active, running, boxing, karate and other sports to not being able to do the simple things for myself that everyone else takes for granted. It’s so infuriating to say the least.”

“The ESA process I undertook in no way reflected the condition and was a general assessment. At the time I was awaiting spinal fusion surgery and it was obviously assumed, due to complete lack of knowledge of the condition that I would then be able to resume work. A lot more education is required as the so called 'medical experts' have no idea..... As a result of the whole process, after the statutory 12 months of ESA had been provided it then lapsed and I did not have the physical or mental energy to go through it all again. As a result I have to rely on my wife working full time to cover our bills, as I only receive DLA. I wonder how people cope with no other form of income being received in the home, knowing that any prospective employer would not give them a second glance, let alone be accommodating about the various complications associated with AS. Despite what the rules may now be, I cannot blame employers for taking on anyone with such a condition. I was self employed so didn't have anyone to fall back on and the insurance I did have over many years fell short because of AS!”

“It was brutal, invasive, humiliating and there seemed to be no understanding of my condition.”

“It’s a poorly organised, mismanaged organisation which has no interest or intention of dealing with people as individuals and appear to be more concerned with achieving targets and cutting costs irrespective of individual circumstances.”

“I was found fit for work yet I haven’t been able to do my job for 4 years which I still have. I am living off a health pension that I get from my job which is £56 a week as I can’t get ESA or PIP yet other people with one of my conditions get both ESA and PIP, it’s just not right”

“In my case the application was made about a week after my husband died, the person asking the questions was quite kind but didn't grasp the complexities. The first application went missing in the post and I had to wait for a second to be sent out. I believe that my GP must have added a letter to my sick note as I was awarded Support Group after about 12 weeks without the need for an assessment. I have had no word then or since regarding how long my award is for.”

“People with disabilities should never be made to feel like they are liars from the offset. They should be treated with respect.”

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“Those of us who need support get forced to fight for everything... The stress of going for medicals makes you feel awful and the wait can be up to 2hrs after time given for a medical which is not helpful at all.... I have been asked on many occasions if I take my medication... My answer is I wouldn't be able to get up if I didn't... Also people think that as I don't look out of it on my strong meds I can't be taking them. I happen to over-ride most medication”

“I wasn’t eligible on either the income or contribution but they did pay my NI for 6 months I believe, it was never quite clear.”

“In my letter to say I was to be put into the support group, there was no indication of how long it would be until I have to reapply for ESA. On further investigation, I found this is/was happening on a regular basis. There seems to also be far too much importance put into the possibility of working, what you can/can't do and no interest in whether or not you could even get to work or home afterwards or even how working could/would impact your life outside of work.”

A few did have a more positive experience.

“It was less stressful than I expected. I do have other, non-musculoskeletal health issues that will have affected the outcome considerably.”

“My advisor takes my limits into account so does not pressure me in returning to work yet but knows I am keen to through time”

“Got it straight away. Have not had a medical from them only PIP”

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Personal Independence Payments (PIP)

Have you applied for or are you currently receiving PIP?

Yes 37.00%No 63.00 %

Were you receiving Disability Living Allowance when you applied for PIP?

Yes 7.46%No 89.55 %Don’t know 2.99%

Please tell us about the DLA award you were receiving.

Highest rate Middle rate Lowest rate Don’t knowCare Part 8.57% 5.71% 40.00% 45.71%Mobility part 35.48% 3.23% 6.45% 54.84%

Were you aware that there were different ways to apply for PIP?

Yes 7.69%No 88.46%Can’t remember 3.85%

How did you start making your PIP claim?

Over the telephone 53.33%Department for Work and Pensions sent a form 44.44%Department for Work and Pensions arranged a home visit 2.22%

How did you find filling in the PIP claim form?

Very easy 0.00%Quite easy 22.50%Quite difficult 47.50%Very difficult 30.00%

Respondents found that the length of time needed to complete the form was a major issue, as were the style of the questions:

Incredibly convoluted

Very detailed info required and it took a very long time to fill in

Took a long time to complete as I cannot sit in the same position for a long time due to the pain

The questions were very long and sometimes a little confusing. It was necessary to complete the form bit by bit over a couple of weeks

As you get fatigued it takes a long time to write

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Some had no problems with completing the form:

It wasn’t as bad as I thought

Questions easy to understand

Quite straight forward and easy to answer questions

Were you given help to complete the claim form?

Yes 30.23%No 65.12%Don’t remember 4.65%

Who provided this support?

Family or friend 33.33%Care or support worker 4.17%Welfare rights or benefits advisor 16.67%Department for Work and Pensions (over the phone) 0.00%Department for Work and Pensions (home visit) 4.17%Can’t remember 12.50%Other 29.17

‘Other’ respondents had help from charitable organisations for specific conditions.

You had one calendar month to complete your claim form and return it. Did you find this long enough?

Yes 64.29%No 28.57%Don’t know 7.14%

Please tell us why one month was not long enough.

There was a delay in receiving my form in the post 45.66%I was waiting for someone I know to help me 4.35%I was waiting for an advice appointment 4.35%I was too ill for part/all of the time 41.29%I was on holiday part/all of the time 4.35%

Did you know you could ask for more time to complete your form?

Yes 17.78%No 82.22%

If you asked for an extension to the one month were you given it?

Yes 2.56%No 0.00%Not applicable 97.44%

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Did you include any information about your condition such as information from a health or social care professional when you returned your form?

Yes 53.66%No 39.02%Don’t know 7.32%

To what extent do you agree with the following statement: I felt I was able to fully explain the impact of my condition on all aspects of my life through the PIP claim form.

Strongly disagree 19.51%Disagree 43.90% Neither agree nor disagree 14.63%Agree 19.51%Strongly agree 2.44%

Similarly to ESA, respondents found that fluctuating conditions were not taken into account:

It’s a complicated condition which varies all the time due to a variety of reasons. I also got worse health wise from filling in the form to when I was seen

The questions are not disease related, more about general health issues and can apply to all

It’s hard to measure due to its irregularity. Also, the form doesn’t ask about night time or help needed at night

Were you asked to attend a face to face consultation with a healthcare professional?

Yes – with ATOS 48.84%Yes – with Capita 23.26%Yes – not sure who with 6.98%No 20.93%

If you needed to change the date and time of your consultation meeting, were you able to do this?

Yes 19.51%No 2.44%Not applicable 78.05%

How many days notice were you given from receiving your appointment date/time to attending your consultation meeting?

Less than a week 2.63%1 – 2 weeks 39.47%2 – 3 weeks 18.42%3 – 4 weeks 2.63%Over a month 13.16%Don’t know 23.68%

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Where did the consultation take place?

At my home 38.46%At a consultation centre 43.59%Other 17.95%

‘Other’ respondents were still waiting for their appointment to be arranged.

Did you have your consultation at your preferred location?

Yes 70.59%No 29.41%

How long did it take to get to the consultation centre?

Less than 30 minutes 10.34%Between 20 and 60 minutes 48.28%Between 60 and 90 minutes 3.45%Over 90 minutes 0.00%Don’t know 37.93%

How long did the face to face consultation last?

Less than 30 minutes 7.89%Between 30 and 60 minutes 63.16%Over 90 minutes 13.16%Don’t know 15.79%

When you were at the consultation centre:

Was it accessibleYes 29.41%No 17.65%Not applicable 52.94%

Was your appointment on timeYes 52.94%No 14.71%Not applicable 32.35%

Were you given the information you needed in your preferred formatYes 51.52%No 6.06%Not applicable 42.42%

Were you made aware of the option to request a home visitYes 17.65%No 44.12%Not applicable 38.24%

Were you made aware that someone could attend the consultation with youYes 44.12%No 23.53%

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Not applicable 32.35%

Did the healthcare professional perform a physical examinationYes 48.57%No 22.86%Not applicable 28.57%

If you had a physical examination, did the healthcare professional ask of you were comfortable with this before going ahead

Yes 37.50%No 15.63%Not applicable 46.88%

Did the physical examination cause you any pain or discomfortYes 46.88%No 6.25%Not applicable 46.88%

Did you feel the physical examination was appropriate for your conditionYes 25.00%No 31.25%Not applicable 43.75%

To what extent do you agree with the following statements about the consultation and the person who carried out the consultation:

They understood my condition.Strongly disagree 24.32%Disagree 18.92% Neither agree nor disagree 29.73%Agree 9.21 %Strongly agree 2.70%

They took into account how my symptoms can change or fluctuate.Strongly disagree 29.73%Disagree 16.22% Neither agree nor disagree 24.32%Agree 27.03%Strongly agree 2.70%

They took the right amount of time to communicate effectively with me.Strongly disagree 11.11%Disagree 16.67% Neither agree nor disagree 22.22%Agree 41.67%Strongly agree 8.33%

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They took into account additional evidence about my condition that I brought with me.Strongly disagree 17.14%Agree 14.29% Neither agree nor disagree 40.00%Agree 20.00%Strongly agree 8.57%

They treated me with respect.Strongly disagree 2.78%Disagree 8.33% Neither agree nor disagree 25.00%Agree 47.22%Strongly agree 16.67%

My health was adversely affected in the days that followed the assessment.Strongly disagree 8.11%Disagree 21.62% Neither agree nor disagree 27.03%Agree 24.32%Strongly agree 18.92%

How long after your consultation did you have to wait for a decision about your PIP claim?

Up to 2 weeks 11.43%2 – 4 weeks 31.43%Over 4 weeks 20%Over 6 weeks 8.57%Over 8 weeks 0.00%Over 10 weeks 0.00%Over 12 weeks 28.57%

Were you awarded PIP?

Yes 44.44%No 36.11%Don’t know 19.44%

What PIP were you awarded?

Enhanced rate Standard rate Don’t knowDaily Living Allowance 12.00% 52.00% 36.00%Mobility Part 9.09% 40.91% 50.00%

What length of time were you awarded PIP for?

6 months 12.50%7 – 18 months 16.67%18 months – 2 years 20.83%2 to 5 years 50.00%

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Have you seen a copy of the report from your assessment?

Yes 25.00%No 75.00%

Did you feel the report was an accurate reflection of the answers you gave in your consultation?

Yes 10.34%No 24.14%Don’t know 65.42%

Have you appealed the outcome of your PIP decision?

Yes 30.00%No – I decided not to 46.67%No – I didn’t know I could 23.33%

What information were you provided with regarding the possibility of appealing the decision?

Information on which organisations can support your appeal 0.00%How to appeal 33.33%The timescales for appeal 26.67%The costs of appeal 0.00%None 53.33%

Were you at any stage dissuaded to appeal by government or PIP assessment providers?

Yes 20.00%No 80.00%

What was the outcome of the appeal?

There was no change 10.53%I received a different PIP award 5.26%The length of time I was awarded Pip for was increased 5.26%I am still waiting for the decision 31.58%Don’t know 47.37%

Respondents were asked to give further comments about the process.

“After being awarded DLA indefinitely I had written to the awarding body annually to inform of my progress. My objective was to return to work. To facilitate this I was retraining (paid for by myself) and attending rehabilitation classes (privately funded as unavailable on the NHS). The letters were ignored until the austerity measures were introduced and then the entire DLA was stopped. At this point I was starting to undertake voluntary permitted work as allowed by the terms of incapacity benefit and hopeful that the move to ESA would help support my transition back to the workplace 10 years after having to leave due to severe onset RA. Sadly my hopes were dashed when I met with ATOS and discovered that the process was not at all about helping people back to work but simply cutting the benefits bill. I was fortunate to find work but it was much longer hours than I felt appropriate (although I love my job) and I was put in a position of trying to hide any problems that I had as I had to compete for work with those who were fully able.”

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“You are made to feel like a fraud, there is no understanding of AS whatsoever”

“I used to be an Atos assessor so I knew what parts of my daily life would end their lines of enquiry. I also repeated the phrase repeatedly and reliably several times. I am very aware that less scrupulous assessors take something you do once in a while and record it as if you are able to do it repeatedly. I was very annoyed that the assessor tried to catch me out by asking if I came in the front door from the car park. There was quite a walk to do this. As it was I had gone to a side door and was let in there. She seemed really put out by this! I find it sad that most of these assessors do not believe in FM and groan when they have someone with it as they 'always seem to have loads of other things wrong with them'!! It was definitely the fact that I have a lesion on my sciatic nerve that got me the PIP, despite the amount of medication I take for the FM. This time I did not have to attend an appointment I was awarded it from the form. A nice surprise. I need it for my blue badge, which to me is a godsend. It also helps fund the rented scooters when I go away. If not I would never see anything!”

“I receive DLA as a result of a different disability (Registered Blind) - it has never been suggested that I apply for any benefit as a result of my ankylosing spondylitis even though its disabling effects have prevented my working normally”

“I was given help by a benefits adviser to complete my PIP form but even she had problems understanding or answering questions with me. I do not believe that the questions asked fully allowed me to tell them about my condition. As I was having a particularly bad time when the assess came to my home I feel that the questions she asked of my condition were not complete as I found it very hard to talk to her as I was at that present time very depressed - another symptom of my condition! Overall I do not think that the way PIP is laid out and the assessments they do is a fair way for me to let them know how my condition affects me”

“Haven’t managed to finish my form so have not submitted it as they sent me a paper copy and I cannot write”

“I was turned down on the fact that my condition is variable and therefore I had good and bad days. I was made to feel like I will have to wait until my condition is extreme before I reapply and even then may still be refused”

“I think they fail to take into account the impact of invisible illness and that it affects mental health. I think if you cannot work due to a condition and that not working improves your pain levels it does not mean your disease is less severe. I get no money from anybody and have contributed NI and income tax since age 18 till 53 but because I am not in a wheelchair, choose a no drugs route to managing my condition and can throw some food in the microwave and stand in the shower I'm perceived as ok. The process was good in that although I never filled in any forms they still processed me.”

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Additional information

Have you needed help to claim benefits from an organisation such as a local CAB, local authority welfare rights, charity or advice group?

Yes 38.98%No 61.02%

Respondents were asked to name the organisation that assisted them

Most were assisted by the Citizen’s Advice Bureau but some were also supported by local welfare rights groups and charities.

How easy was it getting the advice or help you needed?

Very easy 14.63%Quite easy 26.83%Neither easy nor difficult 9.27%Quite difficult 14.63%Very difficult 14.63%

Please tell us which benefits(s) you receive:

Carer’s Allowance 5.00%Disability Living Allowance 61.67%Employment and Support Allowance 6.67%Housing Benefit 5.00%Incapacity Benefit 0.00%Income Support 1.67%Job Seeker’s Allowance 0.00%Severe Disablement Allowance 3.33%Working Tax Credit 3.3%None 33.33%Other – Attendance allowance 6.67%

Key Messages, Summary and survey data compiled and arranged by Jill Hamilton, Development Manager, National Ankylosing Spondylitis Society.

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