Tag Archives: Rant

Urgh, idiots everywhere

Just received an email ‘reply’ from EHRC – I use the term loosely as ‘reply’ implies that you actually read and understood the original query.

In order for a person to be classed as having a disability they have to meet the definition of a disability as set out by the Act. The Act says that a person must have a mental or physical impairment which has a substantial, adverse effect on one or more of their normal day to day activities. The substantial effects should be long term meaning they have lasted 12 months, are likely to last for 12 months or for the rest of a person’s life.

If a service provider requires an individual to sign a legal contract it is likely that this procedure should be adhered to. The service provider would need to consider making reasonable adjustments to this procedure if it placed a disabled person at a substantial disadvantage.

From the information that you have given, it appears that the DWP made a reasonable adjustment by allowing you an appointee who could sign the forms. This reasonable adjustment may not have been suitable as this would then have meant that the appointee would be held responsible for the liability of the car.

The DWP could look at other adjustments they could make in order for you to sign the forms for the Motability contract hire scheme. May I ask if you have a signature stamp? If you do then it is possible that the DWP could accept this method of signing the forms.

If you feel that the DWP have failed to make reasonable adjustments for you, you could consider taking formal action. There are strict time limits of 6 months minus 1 day from a specific incident date to do this. It is your responsibility to take the appropriate action within this time.

I can’t decide if I can be bothered to write back and explain that forcing someone to relinquish their rights when they’re a perfectly competent and intelligent human being is HARDLY A REASONABLE ADJUSTMENT.

Deep breaths.


Sodding DWP

Life was going smoothly for a few weeks there but it looks like I’ve found a new battle. I must have looked bored!

Just emailed the EHRC:

I believe that the Department for Work & Pensions are discriminating against me because of my disability.

I have motor neurone disease and as a result am paralysed. As such, I am unable to hold a pen and therefore unable to sign documents. Because of this, against my better judgement, I agreed last year to my friend becoming my appointee for DWP purposes. To do this, I had to declare that I am incapable of managing my affairs. At the time, my survival rested on my receipt of benefits so I allowed this to happen only to facilitate my financial security. I no longer rely on means-tested benefits but still receive Disability Living Allowance and Incapacity Benefit.

In April of this year I began the process of applying for a wheelchair accessible vehicle through the Motability contract hire scheme. Recently, my DWP appointee was informed by Motability Operations that it would be her who would be held legally responsible for the car, not me. For obvious reasons, neither her nor I were willing for this to happen. I am more than capable of taking responsibility for my own car plus she has no wish to have any liability for a car which she has no control over the use of.

I informed the DWP that my friend was no longer willing to be my appointee over the phone and submitted the forms with a ‘P.P.’ signature, as instructed by the vehicle supplier. However, when they submitted the forms to the DWP the process ground to a halt. My mother telephoned the DWP to inquire what the problem was. They refused to divulge any information to her or me and informed her that if I was unable to sign the form then I would be unable to have a car on the Motability scheme.

I intend to make a complaint to the DWP but am I right in claiming that they are breaching the Equality Act 2010 by not making reasonable adjustments to the service that they provide? Surely I should not have to hand over my autonomy to someone else because the DWP have not anticipated my inability to hold a pen and sign? I’m certain that I am not the only service user with a brain that functions but hands that don’t.

I await your advice. Thank you very much for your assistance.


Fab friends!

You guys (you know who you are!) have been amazing! Over 30 of you have emailed your MP.

A schoolfriend, Karen, sent me the reply she has already received from Reading West MP, Alok Sharma, which I’m posting here so you can all read it.

‘Thank you for contacting me regarding the APPG report on MND and palliative care.

‘Progress is being made in improving end of life care. The APPG report helpfully draws attention to the need to ensure that good quality end of life services are available to all, whatever their diagnosis.

‘The work Ministers are doing to improve end of life care, and modernisation within the health service will raise the quality of care for all patients and address many of the concerns set out in the report.

‘With regards to the Early Day Motions, I make a general rule of not signing these. They have no legislative effect, are almost never debated in Parliament and cost the British taxpayer over £600,000 annually in printing and publication costs alone. I do not feel this represents a good use of public money especially given the size of the current budget deficit. I will, however, ensure that the relevant Minister is made aware of your concerns.’

I’d be really interested to read some of your thoughts and opinions on this response. You can put them in the ‘comments’ section below. Obviously, I’m passionate about the subject so I know my immediate & emotional response is that it doesn’t address any issues at all. The following topics really bug me:

  • The Tories are actually systematically dismantling the NHS, piece by piece, which is a whole other issue.
  • I KNOW for a fact that the NHS PCT in his constituency are knowingly ignoring the Department of Health directions on how people should be assessed for healthcare funding. I can only assume this is financially motivated so can’t see how it will ever improve, especially ‘given the size of the current budget deficit’!
  • What about the people who are dying of motor neurone disease RIGHT NOW? 50% of people with MND die within 14 months of diagnosis; by the time MPs have faffed about and rejiggled the NHS, many people will have died, some of them without the support that they and their family & friends need, deserve and are entitled to.

I really want to hear your views on this, guys. I know my emotions can obscure my rational brain! Be honest too.


Great articles (yes, I’m back)!

Before I forget, check out these two articles from today’s news:

Daily Mail article on assisted suicide

While I violently disagree with absolutely everything the Daily Mail stands for and 99.9% of the tripe published within it, I think everyone should be aware of this horrid issue that people like me have to think about.  Specifically,

‘Travelling to Switzerland means people with degenerative diseases who wish to die have to do so earlier than they feel necessary, to avoid it becoming too late to make the journey. Sir Terry said, “That’s what makes me so angry, because I am absolutely sure that if Peter had not had to go to Dignitas, he would probably still be around now.”‘

Before anyone starts panicking, I also heartily echo Sir Terry’s sentiments on assisted suicide: ‘I have no particular interest in ending my life in Switzerland… Actually, I don’t want to die at all, to tell you the truth.’ Couldn’t agree more! I just think that if I did want to let go I should have the same rights to do it as any able-bodied person without having to travel to Switzerland or jeopardising my loved ones.

BBC article: Neurology care ‘is lacking’

All I have to say to this is NO SHIT! When my dad wrote to Theresa May, his MP, to draw her attention to the need for a government-wide, logical approach to help people with motor neurone disease, all he got back was a form letter extolling the virtues of the National Service Framework for Long Term Neurological Conditions. Yeah, because we can all see how useful THAT’s been! It’s about time politicians woke up and realised that saying things SHOULD be done isn’t as useful as actually making sure that they ARE being done in an appropriate, efficient and adequately-funded manner.


Hello crips (and normals).

So, last Friday I was sitting on my bum, ranting about the ridiculous antics of the idiots at my local PCT (Primary Care Trust, for those of you lucky enough to be blissfully unaware of such things). Then my gorgeously brainy sister said, ‘I can’t believe we’ve never thought of it but you should write a blog!’. So I am. And this is it.

For the past seven-and-a-half years I have had motor neurone disease, also known as MND or ALS. This basically means that on the outside of me nothing much works that well anymore but on the inside I’m as perfectly well-adjusted as the next person. I’ve spent a large proportion of those seven-and-a-half years persuading idiots in various positions of authority that, no, I actually am disabled and, given the choice, I’d love to wipe my own butt and not entertain many odd and hysterical women in my own home, but, until someone discovers a cure for this delightful disease I could do with a few of the things our goverment proudly claim they provide for people like me. Hahaha.

My longest and hardest fight so far has been with my local PCT; they have managed to make one basic request for fully-funded NHS Continuing Healthcare drag on for 17 months to date with no clear end in sight. While I researched what the Department of Health decree should happen in the eligibility assessment process, I discovered that no-one in the medical profession appears to have been informed of or consulted on these matters. This is where I come in. I’m very aware of the fact that while my PCT have farted around delaying the process of my application, most people with my illness would have died. In fact, I know of at least three people, one a personal friend, who did die whilst waiting. My hope and intention with this blog is to provide anyone currently in the dark about their rights with the information that they need to apply and be properly assessed for their eligibility for NHS Continuing Healthcare funding. Watch this space!