here - The Brain Tumour Charity

Response to the Personal
Independence Payment
Assessment – Independent Review
About The Brain Tumour Charity
The Brain Tumour Charity is at the forefront of the fight to defeat brain tumours. We fund pioneering
research to find new treatments, improving understanding to bring us closer to a cure. We raise awareness
of symptoms to aid earlier diagnosis and so that the needs of people affected by brain tumours are
understood and can be met. We provide support for anyone affected so that they can have the best quality
of life.
Brain tumours are the highest cause of cancer related death for children and adults under 40. The disease
presents a global challenge to world health and an incredible burden on economies. Yet progress in
treatment has stagnated. As a charity we are committed to having the biggest possible impact for every
person affected by a brain tumour, to defending the most amazing part of the human body, so that getting a
diagnosis no longer means a death sentence.
The experience of our community
Brain tumours are now generally referred to by health professionals according to their ‘grade’, rather than
the terms ‘benign’ and ‘malignant’. This is because brain tumours may change grade over time, meaning they
become more lethal and change in terms of the effect they have on someone’s life.
Brain tumours are graded 1-4 according to their behaviour, such as the speed at which they are growing.
Grade 1 and 2 tumours are low grade, slow growing, relatively contained and unlikely to spread to other
parts of the brain. These low grade brain tumours can still be serious. This is because the tumour can cause
harm by pressing on and damaging nearby areas of the brain, due to the limited space capacity of the skull.
They can also block the flow of the cerebrospinal fluid (CSF) that nourishes and protects the brain, causing a
build-up of pressure on the brain.
Grade 3 and 4 tumours are high grade, fast growing and can be referred to as ‘malignant’ or ‘cancerous’
growths. They are more likely to spread to other parts of the brain (and rarely the spinal cord) and may
come back, even if intensively treated. They cannot usually be treated by surgery alone, but often require
other treatments, such as radiotherapy and/or chemotherapy.
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Each year in the UK, approximately 4,300 people are diagnosed with low grade, slow growing brain
tumours and 5,000 with high grade, fast growing brain tumours. Combined, this represents fewer
than 2 out of every 10,000 people in the UK.
The most aggressive types of brain tumour carry a prognosis of 9 -12 months and patients will
typically spend around 25% of their time in hospital.
Brain tumour is a complex condition which can cause a number of side effects and disabilities.
These are often but not exclusively tumour site dependent, meaning that there can be significant
differences between different patient’s levels of impairment. Additionally the treatments for brain
tumour are extreme and the effects of treatment far reaching and long lasting.
This group have diverse and wide ranging needs. Commonly individuals with brain tumour suffer
from at least 2 of the following symptoms: Fatigue, cognitive impairment, co-ordination difficulties,
mobility difficulties, aphasia (inability (or impaired ability) to understand or produce speech, as a
result of brain damage), partial or total impairment to vision, partial or total impairment to hearing,
personality changes, mood changes (outside the ‘normal’ range), hydrocephalus (water on the brain)
and seizures/ epilepsy. This list is not exhaustive.
Those individuals who had a childhood brain tumour are often left with significant disability as adults. Often
a brain tumour is seen as a hidden disability as symptoms are not always immediately obvious. Additionally
many of these symptoms fluctuate in severity, which can mean communicating and assessing the real impact
can be difficult.
With regard to the above, a system of benefits assessment which looks at an individual’s impairment, rather
than a formulaic system based purely on diagnosis seems appropriate. However we have heard from people
within our community whose experiences of the new PIP assessment have often been negative, with
patients siting time delays, insensitivity and lack of understanding of complex needs as issues they have
encountered in the system.
Recommendations
Recommendation One: Decrease the time the process takes.
This is an on going issue which the DWP is aware of. It is unacceptable for decisions to take many months to
come through. Steps must be taken to reduce the current delays in the system. This is particularly pertinent
to those with a brain tumour as 60% of people with a brain tumour will die within a year.
Recommendation Two: Procedurally embed an assumption that ‘additional support’’ is
required where brain tumour is mentioned in the application.
Due to high incidence of cognitive impairment in this group, we ask that there is a presumption in favour of
additional support for those with a brain tumour. Brain tumour must be added to the list of example health
conditions that may affect mental capacity in table at point 2.10.7 of the PIP Assessment Guide so that it is
clear to assessors that this group often struggle cognitively.
Recommendation Three: Where possible insist that a carer or advocate is present
during assessment.
Due to high incidence of cognitive impairment and memory deficits in those with brain tumour we suggest
that it is recommended to people with a brain tumour that they are accompanied in face to face assessment
by a carer or someone else who can explain the extent of the impairment to the assessor. We suggest this
because those with a brain tumour frequently lack insight into the levels of their impairment because their
cognisance is impaired. We understand that this is not always possible as individuals may have no one
suitable they can bring to assessments, however, due to the likelihood of memory deficit and under
reporting due to lack of insight, a carer or advocate will assist the applicant in correctly describing their
impairment. It is vital that the face to face assessment results in an accurate appraisal of the true
impairment because inaccurate information at this stage may lead to a refusal of benefits leading to
reconsideration and possibly appeal, which is costly in time and money.
Recommendation Four: Ensure assessors and case managers are given guidance on the
needs of those with brain tumours.
In some cases assessors have demonstrated a lack of empathy and understanding of the complex needs of
brain tumour patients. It is vital assessors are able to identify and address the complex needs of this group.
Time and care should be taken in assessing the true levels of impairment, with consideration given to the
fact that impairment is often underreported due to a lack of insight or concern that reporting fluctuating
symptoms will be deemed to equate to dishonesty. We ask that assessors be given guidance on the likely
symptoms and consequent impairment of brain tumour patients which we as charity can provide. If full and
accurate information is obtained during the face to face assessment then this should lead to accurate
decisions about levels of impairment and as such benefit, saving time and money in reconsideration and
appeal.
Recommendation five: Always seek additional evidence from an expert in the case of
brain tumour patients.
Those treating brain tumour patients, such as neuro oncologists and clinical nurse specialists (or another
key worker), are best placed to provide evidence of the day to day difficulties of that individual and as such
evidence from these sources should always be sought prior to a decision being made. We have heard from
individuals who have stated that medical evidence they provided was disregarded during assessment. This is
unacceptable, as this is arguably the most reliable source of evidence about impairment, especially where
this impairment fluctuates over time.
Responses to Consultation Questions
Claimant experience
Consider the PIP process. This includes making a claim, the daily living and mobility criteria used in the
PIP assessment and getting a decision. Please describe:
a) How easy is it for people to understand the whole process? We have heard from people that the
process is troublesome, members of our community report finding the forms, the telephone consultation
and the interview stressful and difficult to negotiate.
Currently the time scales involved are unacceptable and are resulting in both financial and emotional
hardship. Decisions take a long time to come through and when there is a refusal re-assessment and appeals
are also taking a long time to come through.
Due to high incidence of cognitive impairment in brain tumour patients, which in real terms can result in
memory loss, issues with language recall, lack of concentration etc. any lengthy and complex process is
likely to cause difficulty to those living with a brain tumour, particularly where that individual has little or no
support. The telephone call can be a significant hurdle as verbal communication can be hard for some
patients, the application forms are lengthy and for those with cognitive deficit and memory problems
extremely hard to complete and the face to face assessment is a daunting and stressful prospect.
It is for these reasons that we insist that if an individual cites a brain tumour as the reason or one of the
reasons for making the application for the PIP, then this applicant is automatically flagged as in need of
additional support. This will ensure applicants are appropriately dealt with through the process.
‘I messed up my forms for benefits and was refused.’ (Patient)
b) How easy is it for people to make a claim? Generally we hear that people within the brain tumour
community struggle to make a claim, people find that there is limited support and help available and where
there is support we have been told the views of those supporting people through the process are not
considered.
‘I have had to do it for my daughter - she is 16 and not only were the forms daunting enough for a 16 yr old but after
surgery and treatment it was all too much - even the initial phone call was an issue as she found she couldn't
verbalise on the phone at all. We couldn't get help from headway for our forms as she isn't entitled to headway
support here in essex until she is 18 - we have not close Macmillan team so we are not under them at all at present
we also live fairly rural so getting to a CAB or similar is not really an option.’ (Carer to daughter with a High
Grade tumour)
‘I speak for my husband. He had a stroke following his tumour debulking and gets confused very easily so I do most
of his phone calls. Some people will still insist on talking to him but he literally tells them his name, dob and address
and then passes the phone back to me!’ (Carer to Husband)
Face to face consultation
Atos Healthcare and Capita Health and Wellbeing carry out face to face consultations for DWP, either in
a consultation centre or clinic or in the claimant’s home.
Please tell us about the experience of having a face to face consultation with an Atos or Capita health
professional.
Feedback from patients has been that the face to face assessment is superficial with the assessors showing
little or no understanding of the needs of a person with a brain tumour. We have heard feelings of being
tricked by questions and that the questions can seem insulting. The assessment is seen as basic. Patients
are also concerned that they will be in trouble if for example they can walk one day but not the next and
then say walking is a problem.
The PIP Assessment guide states at point 3.2.4 that ‘In choosing descriptors assessor’s should use their
knowledge of the health condition or impairment as a measure of the level of disability that would be expected from
a claimants condition’
This unfairly disadvantages individuals who, as in those living with a brain tumour have a rare and complex
condition. Health care professionals (HPs) are likely to have had very limited (if any) experience of brain
tumour in previous qualifying practice, as the condition is relatively rare (fewer than 2 out of every 10,000
people in the UK) additionally impairment can vary significantly within this group.
Therefore we insist that the following measures are taken in line with our recommendations:
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Where possible insist that a carer or advocate is present during assessment.
We understand that this is not always possible as individuals may have no one suitable they can bring to
assessments, however, due to the likelihood of memory deficit and under reporting due to lack of
insight, a carer or advocate will assist the applicant in correctly describing their impairment. It is vital
that the face to face assessment results in an accurate appraisal of the true impairment because
inaccurate information at this stage may lead to a refusal of benefits leading to reconsideration and
possibly appeal, which is costly in time and money.
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Ensure assessors and case managers are given guidance on the needs of those with brain tumours.
As above if full and accurate information is obtained during the face to face assessment then this should
lead to accurate decisions about levels of impairment and as such benefit, saving time and money in
reconsideration and appeal.
Further evidence
Key to the accuracy and quality of the assessment is getting the best, most relevant evidence (known as
further evidence) from a variety of sources including GPs, hospitals, social workers, family members,
carers and existing DLA information. Claimants can send supporting evidence with their 'How your
disability affects you' form but they do not have to do so. It is part of the Atos or Capita health
professional’s role to consider what additional evidence will help them in providing advice on the claim to
the DWP. They are responsible for requesting it from people listed on the claimants’ form where they feel
it is necessary.
Consider how further evidence is used in the PIP process. Please provide information about whether
further evidence is being:
We have heard from people that evidence from specialists is not being sought or relied upon.
‘..it seems the surgeon, oncologist, and oncology team aren't qualified to tell the DWP about my husbands tumour’
(Husband has a brain tumour)
We recommend that further evidence is always sought if the applicant for the PIP has a brain tumour as a
specialist (ideally a clinical nurse specialist or other key worker) will be able to provide a complete picture of
the level of impairment. This is vital for the reasons outlined above.
Assessment criteria and process
The PIP assessment considers the impact of an individual's physical, mental, cognitive, sensory or learning
condition on their daily life, taking account of multiple or fluctuating conditions. It is designed to measure
the impact of a person’s condition on their ability to participate, rather than the condition itself. It does
this by looking at a number of key daily living and mobility activities.
Most assessments are carried out as a face-to-face consultation in a clinic or the claimant’s own home.
Where there is sufficient evidence available already, sent in by the claimant or gathered from other
sources, some assessments can be completed on a paper basis. People claiming under Special Rules for
terminal illness are not required to attend a face-to-face assessment.
Where you have evidence of any of the following, please describe how effective the PIP assessment is:
a) For people with one condition? The impairment resulting from a brain tumour is often complex and
multifaceted. Those who have had a face to face assessment feel that there was a lack of understanding and
empathy displayed by the assessor’s. Hence we are making the recommendations cited above.
c) For people with conditions that change (fluctuating conditions)? Again the assessment does not
account for the needs of those living with a brain tumour, fatigue, which is common place (especially after
radiotherapy), often fluctuates in severity, from day to day and frequently within a 24 hour period. During
an assessment, this can be extremely difficult to measure in terms of impact; however fatigue could impact
on most of the Descriptor criteria, if experienced as severe on a given day.
d) For terminally ill people? We have no anecdotal response here however we would question the use of
the 6 month parameter for ‘terminally ill’, in terms of cancer the brain tumour GBM is deadly, incurable and
the prognosis is usually 9 -12 months with treatment, those with a GBM generally spend up to 25% of their
time in hospital. Arguably those with this diagnosis should fall into the terminal category but would
presumably currently be excluded due to the 6 month cut off?
f) In identifying those eligible for the mobility component of PIP as a result of needs arising from their
condition? Lack of understanding by assessors generally leads to inaccurate assessments. Often patients,
whose impairment fluctuates will answer questions based on their best days, it is not made clear that the
assessment is to consider both good and bad days and there is a fear of being caught out if they state they
have symptoms they are not actually experiencing on the day of the assessment.
Reconsideration and Appeals
If people are unhappy with the decision made on their PIP claim, they can ask DWP to look at it again. The
first stage in this process is reconsideration. If people are still unhappy after this has happened, they can
appeal via Her Majesty’s Courts and Tribunals Service.
In your experience what are the reasons for people making an appeal to Her Majesty’s Courts and
Tribunals Service (HMCTS)?
Generally appeals are made where it is felt that the initial assessment failed to recognise the level of
impairment. People have felt extremely stressed and like they are ‘on trial’ when appealing.
‘Went to appeal and the rep I took with me wasn't allowed to speak a word on my behalf. I was in tears. So
frustrated because I couldn't say what I wanted to say and consequently was told to find work. They didn't listen to
me. Now I am undergoing tests for right sided heart enlargement and enlarged cardiac blood vessels. No wonder I'm
struggling breathing as well as everything else that's wrong.’ (Patient)
‘I was treated like a criminal at that tribunal. I was made to feel like I had committed a crime sat on trial with no
witnesses to help me. Looking back I get angry now. I would hate anyone else to go through what I went through.
There were trick scenarios and questions to trip me up and even though I took a representative with me, he wasn't
allowed to voice his opinion or concerns at the time. At the end of it all he said I had been treated appallingly.’
(Patient)
It is here that the evidence of a specialist should be sought as stated if this has not happened previously, as
usually the appeal is because the applicant feels that the true level of impairment is not reflected in the
original decision.
Improvements
The DWP has acknowledged that currently the overall PIP process is taking longer than expected and has
said that it is committed to making improvements as a priority.
What has been your experience of the time it takes from making a claim to getting a decision?
We are aware that Macmillan have cited 8 week waits for the ‘fast tracked’ terminally ill applicants and
support that call. We are aware of non fast-tracked applications taking several months.
‘We put our claim in in December we are still waiting for the initial interview, I have had to contact our local MP
who contacted the DWP and now we have our interview/assessment in Aug but on the letter it states we will have to
wait for up to 8 weeks for a decision!!!! it seems the surgeon, oncologist, and oncology team aren't qualified to tell
the DWP about my husbands tumour’ (Spouse of patient with a brain tumour JULY2014)
‘We sent it in February have had the assessment(s) and have to wait another 8 weeks or so for a decision, and my
claim is for December last year!!’ (Patient)
‘I have been waiting 5 .. months …’ (Patient)
What have been the impacts of this?
This is a considerable issue, with backlogs in the system meaning that people are placed in considerable
financial and emotional hardship.
‘The stress of it all just caused me more seizures.’ (Patient)
DWP is introducing PIP in phases, learning from new claims experience and how natural reassessment is
working in limited geographical areas before rolling out further.
Consider the whole PIP process. This includes making a claim, going to a face to face consultation, the
daily living and mobility criteria used in the PIP assessment and getting a decision. What improvements
could be made? Please explain how these improvements would help.
Our recommendations are outlined above.
Contact
If you would like us to provide any verbal evidence on any of the above or for further information please
contact Rebecca Shortt, Policy & Advocacy Manager at [email protected]

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