Personal Independence Payment (PIP)
assessment: first independent review call for
evidence
RNIB group response
About RNIB group (Question 1)
As the largest organisation of blind and partially sighted people in the UK, RNIB is
pleased to have the opportunity to respond to this consultation.
We are a membership organisation with over 12,000 members who are blind,
partially sighted or the friends and family of people with sight loss, and more than 80
per cent of our Board of Trustees are blind or partially sighted. We encourage them
to be involved in our work and regularly consult with them on government policy and
their ideas for change.
As a campaigning organisation of blind and partially sighted people, we fight for the
rights of people with sight loss in each of the UK’s countries. Our priorities are to:
 stop people losing their sight unnecessarily
 support independent living for blind and partially sighted people
 create a society that is inclusive of blind and partially sighted people's interests
and needs.
The RNIB Group comprises of, Action for Blind People, Cardiff Institute of the Blind,
certain local societies and RNIB itself.
RNIB group also provides welfare advice and advocacy to blind and partially sighted
people through RNIB’s legal rights team and Action for Blind People’s Independent
Living Co-ordinators.
Introduction (Question 1)
We are pleased to have the opportunity to submit evidence to this review of
Personal Independence Payment (PIP).
In preparation for submitting our evidence we sought out the experiences of those
blind and partially sighted people who had undertaken the assessment process. We
did this through our volunteer groups, social media networks and via front line
welfare advisors within RNIB group. For the purposes of this consultation we have
included testimony from ten claimants to illustrate the feedback we’ve received.
At this early stage in the lifespan of the new benefit we are reluctant to draw too
many conclusions on the introduction of PIP. However there are themes emerging
that the Department of Work and Pensions (DWP) should address as a matter of
urgency.
Due to the nature of the evidence we have gathered we have set out our evidence
thematically and are only responding to the questions we have expertise in. We will
indicate which questions in the call for evidence our comments relate to.
RNIB is also an active member of the Disability Benefits Consortium (DBC) and fully
endorse the DBC evidence submitted to this review.
Delays in PIP applications (Questions 8 and 9)
Since PIP’s introduction RNIB group have been assisting blind and partially sighted
PIP claimants with the application process. Whilst we understand that we are not
alone in raising the issue of delays in the system, we would like to take the
opportunity to reiterate how these delays are causing stress, anxiety and potential
financial loss to blind and partially sighted claimants.
Our welfare advisors in Action for Blind people are experiencing an average of
nearly 7 months between starting a claim and the award decision. This includes one
claimant who made their initial claim by phone on the 1 October 2013, wasn’t invited
to undertake an assessment until 2 June 2014 and didn’t receive an award decision
until 14 July 2014, a full nine and a half months later.
RNIB agrees with Margaret Hodge MP, chair of the Public Accounts Select
Committee, in her statement that the introduction of PIP has resulted in "significant
delays, a backlog of claims and unnecessary distress for claimants who have been
unable to access the support they need to live, and in some cases work,
independently".
In addition to our own experience in assisting applications, the overwhelming
majority of testimonies we gathered from blind and partially sighted people
highlighted the length of time that the application process took as a focal point of
frustration. Many highlighted both the stress that is placed on a claimant, who may
still be dealing with recently losing their sight, as well as the lack of financial support
that the delays bring to those who need it most. It is worth noting that two in five
people with sight loss face some or great difficulty making ends meet so can ill
afford this delay in receiving vital financial support.1
“It was easy enough to claim, but the form was filled in in November 2013, and the
face to face assessment was not held until July 21st 2014. This was really
challenging financially, as I had been working, running my own business until I had a
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McManus S and Lord C, (2012) Circumstances of people with sight loss
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cardiac arrest in July 2013 and totally lost my income, which was a good one. I also
have four children to provide for.” Timothy, Cheshire
“The application process was fairly quick as I had assistance from action for the
blind. However that was the only thing that was quick as my application was
received by DWP at the beginning of October 2013. I rang and spoke to numerous
people regarding the length of time it takes as it states 26 weeks on the forms, to be
told there's nothing they can do and 26 weeks is only a guideline. I am registered as
severely sight impaired. Although I try to maintain my independence as much as
possible I do need extra items to ensure my safety which to my understanding would
be what PIP is there for - to enable you to maintain independence?... My
understanding of PIP is to enable people to keep their independence where possible
and for you to be given the tools i.e (money) to ensure you can do this. However the
PIP process has only been at a cost to me in the amount of time and money, not to
mention the stress it causes making all the phone calls and getting nowhere... ”
Cathy, Merseyside
Furthermore, as mentioned in Cathy’s comments above, the stress of the delays is
regularly exacerbated by the poor communication a claimant receives during this
period. Timothy, a client of Action for Blind People in Cheshire, found that despite
regular attempts to find out what was going on with his assessment by Atos, he was
met with a brick wall and he and his wife were left dealing with the stressful position
of financial uncertainty:
“When my wife and also an employee of Action For Blind People rang DWP or Atos
Healthcare to try and get updates on a face to face interview, they really did not
seem to be interested in our situation. It is all well and good getting PIP backdated if
you get an award but that does not help the immediate financial hardship that is
crippling not only financially but emotionally.” Timothy, Cheshire
Others found themselves in similar situations:
“The assessment was fine and clear. Our issue is that it took so long from submitting
the claim, to having the assessment, and we heard nothing during that time until I
rang Atos.” Anna, Merseyside
“My application was received by DWP on 17th March 2014. They initially told me
that the process should take no more than 12 weeks and that my application has
been forwarded for a medical assessment. So I waited for 12 weeks and I haven't
heard from DWP or Atos in this period. I called DWP after 12 weeks at which point
they told me that it is now taking them 26 weeks to process applications.I was
extremely annoyed that that they can arbitrarily change their processing times
without informing existing applicants.” Kiran, South east
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“I found applying for pip relatively easy although I would say the process of waiting
for an assessment was extremely long. I had to wait over 9 months before an
assessment and that was after constantly chasing it up.” Gemma, St Helens
With greater roll out of PIP expected over the coming years to transfer all current
Disability Living Allowance (DLA) claimants onto PIP, it is vital that the DWP take
urgent steps to ensure that the application process is sped up. Delays of up to a
year could easily cost a person with sight loss up to £4937.40 of the support that
the assessment process determines they need. This is due to regulation 17 of the
PIP (Transitional Provisions) Regulation 2013 which states that PIP will be paid from
the date of determination rather than the date of claim when a claimant was
previously entitled to DLA.
For example, “Mrs A” is registered partially sighted and receiving the lower rate of
the care and mobility components of DLA. She lives in a PIP reassessment area
and suffers deterioration in her sight so she asks for a review of her DLA. This
results in her making a claim for PIP.
Due to her advancing sight loss, she would be entitled to the enhanced mobility and
daily living components of PIP.
If it takes the DWP a year to make a decision on her claim, because PIP is paid from
the date of decision rather than the date of claim, she will in effect have lost
£4937.40 because of the delay in processing her application.
Even with an average delay time that the RNIB group is already experiencing of 9
months, people with deteriorating sight could be as much as £4,000 worse off under
the transition to PIP and left for 9 months without the level of financial support the
PIP assessment says they need.
Delays Case Study
Tez from Lancashire, registered blind
Working with Action for blind people’s Independent Living Co-ordinators, Tez
applied for PIP on 26 June 2013. Tez found the face to face assessment “alright” as
“the person asking the questions was pretty competent and seemed to understand
about sight loss”.
Tez was awarded the enhanced rate of both PIP components reflecting the high
level of support he needed living without sight. However Tez only received his letter
of award on 16 May 2014, nearly a year after first applying. Not being in work, Tez
was left without essential financial support for far too long.
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“I had to rely on family and friends. It was depressing. As I was not in work I had no
income. As soon as I got my back pay from the award I had to pay it back to
everyone I owed money to!
“If it hadn’t been for family and friends I would have been in a bad way, as I had to
borrow at least a few hundred quid. They were paying for my TV licence, water, food
and rent. I had a bit coming in for my rent but couldn’t pay for the bills.
“It was hard work. If I didn’t have anyone to help me out I don’t know what I would
have done. I was down all the time and ended up having to go to the doctors for
depression and being prescribed anti depressants.
“The delay was the worst thing about it and not knowing what was going on. I could
have at least had letters letting me know what was happening. I must have rung up
loads of times and they’d just say, ‘It’s still being processed.’”
The Assessment process (Questions 2,3 5 and 10)
Despite the problems outlined above in respect to intolerable delays, our experience
of the award outcomes has been generally positive with the majority of clients in
England eventually receiving awards matching the levels of support they require. If
interpreted correctly, it appears at this early stage that the descriptors accurately
reflect the needs of blind and partially sighted people and adequately recognise the
enhanced mobility needs of those with severe sight loss.
However despite the descriptors being fit for purpose for those with vision
impairment as their primary condition, many blind and partially sighted people have
informed us that they have been met with a severe lack of understanding of sight
loss which can distort their claim.
“The face to face appointment was rather short. Although she did ask relative
questions I found that she didn't really have a clue.” Gemma, St Helens
“It would be better if someone with knowledge of visual impairment was making a
judgement on this complex issue as it is not a visible disability…I found the following
comments on the assessment shocking: ‘You reported that due to your eye sight
sometimes you do not notice that your clothes are dirty. You were able to see items
with your good eye and you maintained good eye contact with the health
professional. Therefore I have decided you can dress or undress unaided.’ - I can
keep eye contact from the outline of the head and direction of voice. ’stand and then
move more than 200 meters either aided or unaided’ was based on the fact that I
was able to ‘walk from the car park to the consultation reception area without any
obvious difficulty’ - I was guided by my sister. I cannot go out alone” Susan, North
East
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“The questions asked at the meeting are leading and are taken out of context. For
example on my application I advised that I struggle to communicate because I do
not recognise people and I regularly walk past people I know which makes them
think that I am aloof and alienates me. However they used the example of me
communicating well with the person in the meeting to eliminate me from being
eligible for an increased award. Obvioulsy if I am in a room with one person who
introduces themselves to me I know who they are and I can talk to them. It is an
entirely different matter walking into a room or a shop when I do not know who is
there and in fact even when I do know who is there if there are more than two
people there I would struggle to identify who is who. Another example is that I
struggle to make a meal..I regularly cut myself and leave the hob lit because I
cannot see what I am cutting or whether the flame is still lit. This doesnt mean to say
I dont try to make myself something just because someone does not give up on life
does not mean they do not still need help...If you cant get help then you have no
alternative but to struggle on and this should be taken into account. Another
example was coins I have learnt to feel the sides of coins to help me identify them
however this is not always easy to do and people do not always have time to wait for
me to stand whilst I feel my way around coins I therefore end up holding out a hand
ful of money to whoever and have to trust them to take the correct amount from
me..again my claim was reduced because the deemed me capable of looking after
money” Steven, West Yorkshire
This lack of understanding of the barriers that sight loss presents can lead to the
wrong decision being made if the descriptors aren’t interpreted correctly:
“The DLA succession, which I have tried to be careful with has resulted in one
person Severely Sight Impaired, arthrtirs, deaf and multiple other conditions not
obtaining any mobility at all.” Pat, Rehabilitation Officer from West Yorkshire
The feedback that we have received in response to the PIP process worryingly
echoes a major concern we have repeatedly raised over the Work Capability
Assessment. The generalist remit of the Health Care Professionals leads to a lack of
specialist knowledge of the unique barriers that sight loss presents. A lack of clear
guidance to address this only exacerbates the situation and can result in an effective
“knowledge lottery” between assessments.There needs to be an enhancement of
guidance for Health Professionals in order to mitigate the lack of specialist
knowledge in sensory impairment. RNIB would be happy to work with the DWP in
order to improve this guidance.
Inaccessible communications (Question 2)
Communication failures create distress and confusion for claimants. Letters are
being issued in print that are unreadable to people with sight impairments. Letters
must be provided in the claimant’s required reading format. Sending print letters out
to people who cannot personally read them due to a sight impairment unnecessarily
disenfranchises them from the application process.
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“All correspondence was in print even though I requested braille. I had to take help
from Action for Blind People benefits team to fill in the application form as this is my
first time applying for a benefit. It is unacceptable that a process that is supposed to
help blind and other people live independently cannot be applied for independently.
The application form had to be filled up by hand which I couldn't obviously do on my
own.” Kiran, South east
“It wasn't in a large enough print for Mum to see - even though it was a large print
form.” Anna, Merseyside
“The form was sent in large print, but even so I needed sighted assistance from
Action to complete it. ie, still not large enough... You should be able to have a form
in whatever font size you need, not just a fits all approach." Sean, Merseyside
The Department of Work and Pensions should routinely record the format
requirements of blind and partially sighted claimants on a database that attaches
this information to the claimant’s record. This recommendation is repeated in the
Social Security Advisory Committee’s occasional paper on Communications in the
benefits system from September 2013:
“A critical aspect of personalised communications is ensuring that people receive
information from the Department using their preferred channel or format. However,
evidence provided by stakeholders and the literature shows that this is not
happening consistently because communications preferences are not routinely
recorded by the Department….
Recommendation 5
The Department must ensure both that its staff routinely record the communication
preferences of its customers and that communications are then provided through the
requested channel or by using the appropriate format.” Social Security Advisory
Committee report on Communications in the benefits system
Ensuring format information is prominent on a claimant’s application notes would
also help ensure the PIP process is in line with the requirements of the Equality Act
2010.
Improving the PIP process (Question 13)
As part of our evidence gathering to inform this response we also sought feedback
from people who have undertaken the PIP application process on how they believe
the system could be improved:
“1. Provide all correspondence in accessible formats. 2. Make it possible for blind
and partially sighted people to fill up the application independently without help
(either an online form or some other means). 3. Process applications of people with
long term disabilities quicker. It isn't too difficult to determine that Retinitis
Pigmentosa is a congenital condition with no treatment or cure. 4. Keep the
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applicant informed throughout the process as to what is going on with their
application. Make sure that communication is in accessible formats.” Kiran, South
east
“I think that communication could be better, a short letter advising the length of time
you expect matters to take should be sent out at the outset so you are not left
wondering whether or not your application is being dealt with or has got lost.
Thought should be given as to where the location of the meeting is in relation to
where the attendee is living and giving thought to what problems they may face in
getting there” Steven, West Yorkshire
“It would have helped if I had received an information pack about who Atos are and
how to contact them, whilst waiting for assessment.” Anna, Merseyside
Incorporating the suggestions that we have received into our own views we have
identified five key improvements that need to be implemented as a matter of
urgency by the DWP:
1. The Department must continue to look at and implement measures to reduce
the delays that currently afflict the PIP application process.
2. Regulation 17 of the PIP (Transitional Provisions) Regulation 2013 must be
amended so that claimants moving from DLA to PIP are not worse off because
of delays.
3. Claimants should systematically be kept informed of progress on their
application if delays occur in order to reduce unnecessary anxiety and stress.
4. The DWP must implement a comprehensive system for recording and sharing
alternative format requirements for people with sight loss to avoid them
becoming disenfranchised from the process of claiming support.
5. Guidance for healthcare professionals carrying out face to face assessments
must be improved to enable a functional understanding of sensory loss in
order to assess a blind or partially sighted claimant accurately.
For clarifications or if we can be of any further assistance to the independent review
team please contact Andy Pike in the RNIB policy and campaigns team:
andy.pike@rnib.org.uk or on 0207 391 2026
Andy Pike
Policy and Campaigns, RNIB
September 2014
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