Proposal to replace Disability Living Allowance with Personal Independence Payment

Written evidence submitted by Lisa Egan (PIP 4)


[1] I am a disabled person currently in receipt of DLA. The change from DLA to PIP will have a hugely negative impact on me. In this report I explain my impairment and how it affects me, why I currently get DLA; and how I will fare under the PIP assessment process. I am not asking you to investigate any individual case; I am merely presenting to you evidence of how one vulnerable person will be harmed. My case is not unique and should not be considered as such, I am merely one example of many of this country’s disabled population who will be adversely affected if the PIP proposals are pushed through in their current form.

Introduction to the submitter

[2] I currently receive DLA at the Higher Rate for Mobility (HRM) and Middle Rate for Care (MRC). The evidence I wish to present is in relation to the element of your inquiry looking at the implications of the reduction in spending and impact on those in need.

[3] I have Osteogenesis Imperfecta [1] and have had somewhere in the region of 50-55 fractures in my 32 years, most recently 2 ½ weeks ago when I bent down and heard one of my ribs snap. Activities during which I’ve broken bones include walking [2] , sleeping [3] , and eating [4] . I get MRC because of my need for constant supervision during my waking hours due to my bones breaking. Osteogenesis also results in my joints dislocating easily [5] .

[4] I get HRM because I'm virtually unable to walk. I can walk a very short distance but only very slowly and with extreme pain and difficulty. My osteogenesis means that a good many of my joints have been shattered so have extremely limited movement. The rest of my joints are held in place by tendons and ligaments of such poor quality that my 4kg cat can dislocate my knee by sitting on it. Because my tendons and ligaments don't do a good job of holding me up I fall over very easily, which is really not very safe in someone with brittle bones. Between the pain, the difficulty, the slowness and the danger involved in walking I'd be pretty much housebound without a wheelchair. I couldn't even walk as far as the bus stop at the top of my street (and it's a short street) before my knees had swollen up so much that I couldn't bend them for the rest of the day. My consultant orthopaedic surgeon has told me to walk less than the little bit I already do around the house because I'm causing permanent damage to my joints. I'm wearing them out and I'm only 32.

Factual information: How my condition affects me and how that is likely to result in me losing my benefit based on a reading of the draft PIP criteria

[5] Having read the draft PIP criteria published in May 2010 [6] it looks like I will not get a penny in future.

[6] The mobility component will no longer be assessed on your ability to "walk"; it will be assessed on your ability to "mobilise". The difference being that they'll consider your ability to get around using a wheelchair. And if you can get around using a manual wheelchair your benefit will be denied. The majority of the time I am perfectly capable of propelling my manual wheelchair. It had to be custom built because my deformed arms [7] mean I couldn’t reach the wheels adequately in a wheelchair off-the-rack; but I can propel it for many miles without difficulty ordinarily. Obviously sometimes I do have difficulties, like when I’ve recently dislocated my shoulder or when I’ve just broken a rib, but I don’t believe it’s frequent enough for me to be deemed incapable of pushing a manual wheelchair 50m for the purpose of the assessment.

[7] Losing my mobility component will mean I lose my Motability car. This will result in my becoming unable to go shopping (because I just can’t carry that much stuff on my lap in my wheelchair). I know some HRM claimants who are unable to drive put their money towards online supermarket deliveries. This will not be an option for me because without my HRM I will be unable to afford the delivery charges! Of course I’ll also be denied almost all social activities without my car: I won’t be able to visit my frail, elderly, widowed, father and I won’t be able to visit friends due to the largely inaccessible nature of public transport. Despite the fact that humans are social beings I won’t end up dying as the result of becoming unable to participate in almost all social activities. However I haven’t yet worked out a plan for being able to get out and procure sustenance. I live alone: I have no partner, no children, and no siblings. My mother is dead and my full-time wheelchair-using father lives 100 miles away. As a result of my current social exclusion even with a car I already have no local friends who could shop for me [8] , so losing my car will put me in great danger.

[8] Then there’s the Care component of DLA becoming the Daily Living component of PIP. According to the draft criteria it will be assessed on:

1. Planning and buying food and drink;

2. Preparing and cooking food;

3. Taking nutrition;

4. Managing medication and monitoring health conditions;

5. Managing prescribed therapies other than medication;

6. Washing, bathing and grooming;

7. Managing toilet needs or incontinence;

8. Dressing and undressing; and

9. Communicating with others.

[9] I notice "needs supervision for safety reasons" has gone. This means I will be losing that along with my Mobility component. It’s not just going to impact on me and other people like me who injure easily due to physical conditions like brittle bones, it'll affect a huge number of people who currently get DLA due to mental health problems or conditions like epilepsy. The safety consequences of this move for so many people will be devastating.

[10] I currently have an indefinite award for DLA: Osteogenesis imperfecta doesn’t get better. Re-assessing me and other people with my condition on an annual/every 3 years/every 5 years/etc. basis would be a complete waste of government money to pay for the assessment and the associated administration. I’m aware that under the current plans I’m going to be losing my benefit but other people with more severe OI than me (people than cannot self-propel a manual wheelchair and/ or people that need help with preparing food, showering or getting dressed) will receive PIP. The re-assessment process will be costly for the government and will not save any money by finding that people have improved, because that improvement will never happen.

Recommendations for action

[11] I’m aware that the government is pushing through these reforms claiming the "most vulnerable" will still be protected and using tables and statistics to show why saving 20% on the DLA bill will be workable. I have written this report to put a human face to the plans and to show you how a "vulnerable" person will be affected when the new criteria is applied. I strongly recommend that the government abandons this plan driven purely by cost-cutting ideals because the impact on so many disabled individuals will be so grave.

[12] I recommend considering the impact on the nation’s motor industry when the overwhelming majority of the UK’s wheelchair users will be having their Mobility component stripped, which will result in them losing Motability car.

[13] Finally I would recommend not regularly re-assessing people with incurable conditions. It will not save the government any money because you won’t find any people that have improved. In fact it would cost money for the assessment process and you’ll be inflicting unnecessary stress on the disabled individual involved.


[2] December 2008 I tore a tendon out of a metatarsal which pulled the tip of the bone off with it. This injury was the result of simply walking normally.

[3] In the early hours of 01/01/2000 I slept in an awkward position. I got woken up by blinding pain at about 4am. The awkward sleeping position had crushed not just one but several vertebrae

[4] As a child I caught my forearm on the edge of the table while eating dinner. This light tap caused my forearm to snap (I only have one forearm bone now where the radius and ulna have been broken so many times they’ve fused together).

[5] Examples include dislocating my right shoulder by bending down to pick up a towel, having my left knee dislocated by someone walking into me and dislocating my left thumb in my sleep.


[7] from being broken repeatedly during my childhood

[8] You may be thinking “but she gets MRC for constant supervision and she has no-one looking after her!” Remember that currently the criteria for DLA are assessed on your need for help, not whether or not you’re actually getting that help.


[8] September 2011

Prepared 16th September 2011