Personal Independence Payment and People with Dementia. The story so far.....

Hi All.


Hope you all enjoyed the last piece on EPA's, LPA's and appointees.


This time around we will be talking about Personal Independence Payment (PIP), the disability benefit that replaced Disability Living Allowance (DLA) in October of 2013 and the way that it has impacted on people with Dementia.

Now whilst there are certain benefits that a diagnosis of dementia would automatically qualify you for, namely the exemption from CouncilTax, PIP requires that you first undergo a medical assessment.


Firstly we'll look at PIP and DLA and what they were set up to achieve.


The Technical Stuff

Disability Living Allowance (DLA) was the benefit that dealt with an individual's need for help with care provision and mobility issues.

DLA was made up of 2 components. These were the Care Component and the Mobility Component.

The Care Component was made up of 3 separate rates. These were :

1. Lower Rate of £22.00 - help for some of the day or preparing cooked meals.
2. Middle Rate of £55.65 - Frequent help or constant supervision during the day, supervision at night or someone to help you when on dialysis.
3. High Rate of £83.10 - Help or supervision throughout both day and night, or you're terminally ill.

The Mobility Component was made up of 2 rates. These were:

1. Lower Rate of £22.00 - Guidance or supervision outdoors.
2. High Rate of £58.00 - You have any other, more severe, walking difficulty.

Most people with dementia would have been on a combination of the 2 rates, dependent on where they were on their dementia journey. Part of the DLA criteria for the Care Component was the need for supervision to avoid putting yourself or others in danger and the inability to prepare a cooked meal. Anyone who has cared for a person with dementia will inform you that these are 2 of the biggest risks involved in dementia, as a person with dementia may start boiling a pan full of water and then forget what they are doing and walk into another room to do something else.

The mobility component would take into account a mental impairment that would render you unsafe outdoors by yourself.

In April of 2013, as part of Ian Duncan Smith's Welfare Reform overhaul of benefits, DLA was changed to Personal Independence Payments (PIP).

PIP was to replace DLA as the benefit that dealt with an individual's need for help with care provision and mobility issues.

The first change in the criteria was the need to be seen by a health professional to work out the level that you were entitled to. This work was no longer carried out by the Department For Work and Pensions (DWP), but rather contracted out to 2 firms, ATOS and Capita, to carry out these assessments on behalf of the DWP.

The next change was the name change of the Care Component part to Daily Living Component in the assessment of care needs.

The Daily Living Component was now made up of two rates. These were:

1. Lower Rate of £55:65
2. Enhanced Rate of £83.10

Now the eagle eyed among you may have noticed that the Middle rate vanished and that the Lower rate was brought up to what the Middle Rate would have been. What this did in essence was to do away with the old Lower rate of care assistance, taking quite a number of people that qualified for this benefit at the lower rate out of disability benefits altogether. This meant that they were £22.00 per week worse off and had to meet their care needs out of their own pockets.

So what did the experts have to say?

In 2011, Alzheimer's Society published a consultation response to the initial draft of assessment criteria for PIP.

In this they expressed concern over the assessment process. They argued that it would be vital that the trained independent assessor and the departmental decision maker has knowledge and understanding of dementia. They recommended that training in the Mental Capacity Act is a mandatory part of training for staff that would be involved in making assessment and there must also be work to raise the awareness of professionals involved in making assessments of eligibility to ensure that they understand the barriers faced by people with dementia.

Alzheimer's Society were also concerned about the fact that dementia is a fluctuating condition and that the person with dementia's ability to perform an assessment task may vary and argued that it would be very difficult for an assessor to know whether an activity descriptor could be completed reliably, in a timely fashion, repeatedly and safely on the basis of a single assessment.

Alzheimer's Society were also concerned about the descriptors regarding managing medication, managing prescribed therapies, communicating with others and the mobility criteria set out. They made recommendations as to how all of these could affect someone with dementia and that the descriptors could skew the overall score for a person with dementia.

To read the full response visit https://www.alzheimers.org.uk/downloads/file/1167/alzheimers_society_response_to_pip_assessment_criteriahttps://www.alzheimers.org.uk/downloads/file/1167/alzheimers_society_response_to_pip_assessment_criteria

The Political Stuff

Ian Duncan Smith (pictured above) argued that too many people were claiming disability benefits that were not needed and that there was a something for nothing culture inherent in British society that needed to be addressed. ATOS and Capita were there to make sure that only those that genuinely needed help would receive disability benefits. To highlight this new approach, in August of 2013, he wrote, "For those eyeballing benefits as a one way ticket to easy street, I have a wake up call for you: those days are over. Strong words indeed. And in the long term not very helpful, as for many years it created the narrative that anyone claiming benefits was scrounging off the system.

I only mention the political climate at the time, as this, in my opinion went a long way to explaining some of the decision making and stories that you will read about later in the blog.

So, what did happen next Mark?

Glad that you asked. From April 2013, the roll out of PIP went ahead and ATOS and Capita carried out assessments on behalf of the DWP. By October 2013, there were already serious backlogs as the system struggled to cope with the switch over from existing claimants from DLA to PIP and new claimants for PIP.
As the National Audit Office stated in February of 2017." The DWP had not allowed enough time to test whether the assessment process could handle large number of claims. When the assessment process took longer than expected backlogs soon developed; by 25th October 2013, the DWP had made only 16% of the number of decisions that it had expected.
Claimants are experiencing long delays to benefit decision, and the Department is unable to tell them how long that they are likely to wait, potentially creating distress and financial difficulties. By October 2013, there were 92,000 people whose claims were outstanding with assessment providers."
Not the most promising of starts and for people with dementia this meant that by the time they were being seen by a Healthcare assessment team, their dementia had progressed by a year, making some of the original statements made on the PIP form inaccurate. Which brings us rather nicely to the.......


PIP Form

The PIP form is split into 2 parts. The first part is the questions that are asked about what help you need with your day to day living. This includes preparing and cooking food, eating and drinking, managing treatments, washing and bathing, managing toilet needs, dressing and undressing, communicating, reading, mixing with other people and making decisions about money.
The second part concerns questions about your mobility and has two sections, going out and moving around.
Now when dealing with someone with fluctuating capacity, this can skew the points scoring system somewhat as there are some days when a person with dementia can perform certain tasks competently and other days when the same task would be completely beyond them. The system is supposed to look at what you are like on your worst day, although this is a point that seems lost on some health assessors.
The points scoring system takes into account that people may need monitoring or require help carrying out certain tasks but the way this is applied is subjective and does not seem to take into account the different ways that dementia affects the individual.
For instance, someone who has Vascular Dementia may be able to walk into a kitchen and get two pieces of bread and grab a tin of meat and make themselves a sandwich. What is not taken into account is the fact that the person with dementia may now be eating a Pedigree Chum sandwich (other dog food varieties are available), so would need monitoring to prevent this from happening. However, if the carer of the person with dementia is at the assessment, they would be able to mention the difficulties involved in making a sandwich.

Do you really know what's in this sandwich?

Sadly, reports that are coming back from the assessment process is that the carer is either not being listened to or in some cases not being allowed into the assessment. Now I'm not saying that this is happening at every assessment centre, but it's happening at enough of them for this to be a cause of concern. To labour the point, I am involved in a case where a person with early onset Alzheimer's Disease was refused PIP on the grounds that he was smartly dressed at the assessment. The problem when assessing a person with dementia is that they will often confabulate to mask the seriousness of their condition, they will sometimes blame others for the things that they are having trouble doing and they will not see issues with the things that they are doing. So, in fairness to health assessors, this can often be at odds with the things that have been put on the original PIP form, which in turn lead to an unfavourable decision for the person with dementia.
So this would then lead to........


The Mandatory Reconsideration (or how I stopped worrying and learned to challenge the assessor's findings)

The mandatory reconsideration is the point in the PIP process when you have been declined PIP but have a chance to challenge the assessor's findings or the decision maker's decision. You will usually have 1 month from the date on the letter to appeal the decision, although sometimes it has been known for the letter to arrive 2 weeks after the date on the letter.
At this point you will be able to ask the decision maker to look again at your case and challenge the findings of the assessor or provide new evidence to support your case. In theory, this means that the decision maker could overturn the decision at that point, if they felt that the assessor had not assessed the case correctly or if the new evidence provided meant that this proved your case beyond reproach. In reality, this is usually upheld by the decision maker with the proviso that they trust their health assessment team to make the correct assessment (Currently ATOS and Capita are having 65% of decisions overturned at tribunal). So after going through this 8 week process to still be informed that the decision maker is upholding the original decision, we arrive at the Tribunal.

Ken Loach explored the PIP process in his much vaunted film I Daniel Blake



The Tribunal Process

After the mandatory reconsideration process has transpired, you then have the chance to take the case to tribunal. Sadly, a lot of people are scared of going through the legal process as they feel that they are being criminalised for having a disability. This is especially true of the elderly as they don't like to make a fuss and believe that the process they will have been through would have been fair. Sadly, this is anything but the case and as I mentioned earlier, 65% of these cases are being overturned in favour of the claimant.
This is where organisations like our good selves come into play and why Supporting People is still an invaluable service for people with dementia. We help people traverse the benefits system when they are having their claims rejected for what appears to be incredibly spurious and at times laughable reasons.
There is support available through Alzheimer's UK and the Gloucester Dementia Action Alliance but funding is stretched and we cannot always reach the amount of people that need helping with this process.
At Tribunal, you are seen by an independent panel of experts. There will usually be three people there, the judge, an independent doctor/nurse and a benefits advisor. They are not tied to the DWP in any way and are there to see that the correct decision is arrived at. As stated before, the turnover of cases in favour of the claimant are at 65%, so this seems to suggest that there is something inherently wrong in the way in which the system is being applied.
Sadly by the time you have reached this stage, usually a year has passed since the initial PIP claim, and although this may result in some large back payments, it does nothing to reduce the hardship imposed on someone with dementia in the meantime.

Not all judges are scary?

The Horror Stories So Far

So let's start with Joy Watson, a woman praised by David Cameron for her work with raising awareness of dementia whilst having the disease herself. Joy had her money stopped when she was transferred from DLA to PIP. The reasoning was that Joy could do all the things that would exclude her from PIP, such as washing, cooking, dressing and budgeting, despite evidence to the contrary. Her husband also had his Carer's Allowance stopped, even though he cares for Joy 24/7. The mandatory reconsideration returned an even lower points score and sadly Joy did not follow on to tribunal and therefore lost all her benefits.
Think that's harsh, how about Wendy Mitchell, who had her PIP taken away as she was told her dementia was improving (a progressive disease that improves, go figure!).  Or Dianne Barret, a woman with advanced Parkinson's Disease who had her PIP taken away because her mobility was improving, making her the first woman to ever start recovering from the disease. Thankfully Dianne took her case to tribunal where it took a panel 10 minutes to decide that the government was wrong.
I could go on but you get the picture.

Not even Stephen King writes horror stories like this

So how do we stop this from happening?


There seems to be only one way of stopping stories like the one above from happening (not the Stephen King one obviously) and that is for the champions of dementia (organisations like ourselves, Alzheimer's Society, Dementia UK and Dementia Alliances throughout Great Britain) to consult with the DWP and the companies that run the health assessment contracts so that dementia is more understood as a disease and that the correct applications of evidence gathering and understanding of fluctuating capacity are taken into consideration before reaching a decision.
So I would like to offer the olive branch to the DWP to get consultation started. And I leave them with the words of every tennis player.


                                                              The Ball is in Your Court                                                                   

Thank you for your time.