Email your MP time again.

Okay, this is a message for my UK friends & family. I asked you to email your MPs last year and tons of you did which was fab and raised awareness of MND & its effects on people. Now I’m asking you all to do it again.

I’ve lived with MND for nearly nine years and have had to fight for nearly everything I have needed, including equipment, care, financial assistance and equal treatment. The majority of people with MND deteriorate and die within two years. They don’t have the time, knowledge or energy to get into battles with social services, NHS trusts, the DWP, etc., etc. The provision of services needs to be vastly improved.

On 1st May, the ‘What next for Neurology’ Parliamentary Reception for MPs is taking place and is being hosted by the All-Party Parliamentary Group (APPG) on MND, along with other neurological APPGs and the Neurologial Alliance. People like me with MND need your help to make sure your MP attends this event to hear about the importance of improving services for people with MND and other neurological conditions.

Please will you spare two minutes to send an invite to your MP and share this message with all your friends?

Thanks,

Kate x

DWP victory!

Well, it took long enough but here is the text of the letter that the Complaints & Correspondence Manager for the DWP sent to my MP last week:

Thank you for your letter dated 21 October about the need for an appointee … for your constituent, Mrs. F.

Firstly, I apologise for the length of time it has taken to reply but as explained during my telephone call to your office we needed to obtain legal guidance about this matter to ensure we actioned Mrs. F’s case correctly.

We have contacted both Motability Operations and our legal group about her circumstances. Although a signature is desirable for validation reasons, (it) is not actually required for a claim to be classed as valid.

Motability Operations tend to follow our lead on whether an appointee is required. They have confirmed that if we are content that Mrs. F can manage her affairs they would amend the contract accordingly. They would ask the customer to write to them explaining the situation and in this case would accept why a signature could not be provided.

As explained, … the Manager responsible for Mrs. F’s case is going to contact the appointee about relinquishing the appointeeship to enable Mrs. F to deal with her own affairs. Once this has been done responsibility for dealing with her DLA and her Motability agreement will lie with Mrs. F.

I hope this info will prove useful for anyone else who, like me, has a functioning brain despite being unable to hold a pen.

* * *

Edit: I’ve forgotten to put the original text of my complaint to Rob Wilson on here, which might be useful for people who want to raise their own issues with the DWP. You’ll find it below:

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, H, becoming my appointee for DWP purposes. To do this, I had no choice but 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 H 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.

Because I am unable to travel by any means other than an adapted wheelchair accessible vehicle, H has reluctantly agreed to sign for the car. We contacted Motability Operations who informed us that H will remain under contract for the car even if she withdraws from her appointeeship. This responsibility can only be transferred to my next appointee or me, if the DWP assess me to be capable of running my own life. This then returns full circle to the fact that the DWP only provide me with two options; my signature, which I am physically incapable of providing or relinquishing my rights to yet another person when I am a fully competent and intelligent human being.

I find the lack of understanding by the DWP to be astounding at a time when all political parties claim to be working towards enabling disabled people to live independent and fulfilling lives, free from discrimination. The DWP are clearly in breach of the Equality Act 2010 by not making reasonable adjustments to the service that they provide to the public as a whole. Their lack of anticipation of service users who have brains that function but hands that do not results in abuse towards the claimant, the appointee and the DWP’s own procedures and systems. For me (or anyone in my position) to claim that I am incapable of managing my affairs is fraudulent yet I am forced by the state to lie or I cannot receive any of the benefits to which I am entitled. An appointee is bound by the terms of their appointeeship to inform the DWP if the claimant becomes capable of managing their own affairs; if they do this then the claimant is left with no way of handling their own life. Therefore the appointee has to collude with the falsehood. In addition to this, an appointee who has no right to stop a competent person from living life however they choose is still liable for any fraud, etc. perpetrated by the claimant. This leaves him/her in an extremely vulnerable position.

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 am not disabled by my muscles not working; I am disabled by the DWP’s lack of adequate provision to all of their service users.

MP update

Well, I’m finally bored with procrastination as a lifestyle choice so it’s time to update you on recent happenings.

A couple of weeks ago, I finally managed to negotiate a face-to-face meeting with my MP. It went well, in that he understood why I was complaining about the PCT’s behaviour and the ridiculousness of the DWP policy on signatures. He said the right things in the right places but lost marks when he completely failed to look me in the eye when I was speaking. Fair enough if you don’t understand my speech but you could at least have the decency to pretend you are interested in communicating and say, ‘Pardon?’ at the end! I think he needs a bit of awareness training. Perhaps when he’s done everything I want him to do for me I’ll educate him, although I’ll have to do it in writing.

Anyway, he confirmed that NHS Berkshire West’s Chief Executive had made no contact with him since promising to investigate in August. Why am I not surprised? He chased it up and just today I received a copy of the letter from the Chief Exec with exactly the same meaningless promise to look into it as he wrote last time. Don’t hold your breath, people! I’m seriously thinking of making the same complaint to the Parliamentary Ombudsman. We’ll see if the PCT can ignore him too.

Rob Wilson also proposed referring my signature issue to Maria Miller, the DWP Minister for Disabled People. I am not too hopeful about her involvement as what I’ve read about her online makes her appear to be about as useful as a chocolate teapot.

I feel like the meeting was just one more step along a very lengthy path. I don’t know how much I can ultimately achieve but I intend to keep making a nuisance of myself and hopefully people will do what I want them to, if only to get rid of me. I’ll certainly be chasing up the MP if he goes quiet but so far so good.

Speedy MP reply!

I’m not great with redacting PDFs so have decided to post just the text of Rob Wilson’s reply to my complaint here. Who knows what loonies are out there looking at my full name and address? I have more than enough mentalists in my life already. Let me know your thoughts (on the reply, not the mentalists)!

Dear Mrs F,

I am writing to convey my apologies for the situation that arose at my constituency office on Friday October 7 ,2011 when you were unable to gain access for your appointment with me.

It is my intention to make myself available to all my constituents, and this is achieved by holding surgeries in various locations around my Reading East constituency. In the past I have scheduled appointments with my disabled constituents at Woodley Library, which has excellent wheelchair access, and I am also able to meet with disabled constituents at the Warehouse Community Centre. I am disappointed that the system failed on this occasion and can assure you that I have taken steps to ensure this situation is not repeated.

I have asked my staff to update my website to reflect the surgery locations that offer wheelchair access and to be more diligent when scheduling appointments. I have also taken this opportunity to remind my staff about maintaining professionalism at all times.

I would also like to take this opportunity to apologise for the length of time you were waiting outside to speak with me. Unfortunately I was already engaged in an appointment with another constituent and was not aware of the situation that developed.

I look forward to meeting with you on Friday.

Letter to my MP, Rob Wilson, Reading East

Dear Mr Wilson,

Further to our correspondence over my treatment at the hands of NHS Berkshire West and the request by Dr. RH of UCL for you to look into my case, I followed your instruction and made an appointment to attend one of your surgeries on 7 October at 3.15pm. I booked a double appointment because of my communication difficulties.

As I believe that you have been informed, I arrived at your office on Friday in plenty of time. I was concerned to note that cars were parked closely together directly in front of the entrance and there was a step up to the doorway. My assistant, Harriet, went to ring the doorbell and it was answered by MS. When she was asked where the disabled access was she replied that there wasn’t any. Once I was out of my car she approached us and started talking to my assistant, not acknowledging that I was speaking to her until directed to do so. Her manner was hostile and extremely dismissive. I pointed out that it is against the law to prevent a disabled person from accessing services and that I hadn’t been informed that the office was not accessible when I made the appointment. Her response was, ‘Well, I didn’t make the appointment’, that the other surgeries were accessible and that I hadn’t informed the office that I was disabled. We explained that all that was needed to comply with the law was a portable ramp to which Ms S replied, ‘I haven’t got money to go round buying ramps’ followed by, ‘there’s no point having a go at me’, in an extremely rude tone.

It was suggested that Harriet and I could wait outside until your current meeting had finished and that you would then come out to talk to me. We agreed and subsequently waited in the car park for approximately 30 minutes. I became very cold and it began to rain. I decided that I was not prepared to wait any longer because my illness is aggravated by coldness and I was already in considerable discomfort. Harriet explained this to Matt who was in the office at the time.

I am only too well aware of the difficulties involved in making premises and services accessible to all. I understand that older properties are not always suitable for adjustments to be made. However, I am making this complaint because of Ms S’s attitude when faced with me and my wheelchair. The Equality Act 2010 states that disabled people have rights of access to services. A service provider must make reasonable adjustments for disabled people in the way that they deliver their services. This did not happen in my case when I attended my appointment at your constituents’ surgery last Friday. Not only was the law not followed but I was subjected to unpleasant and insulting behaviour by a member of your staff and then suffered the indignity of being left outside in a car park waiting for my MP to turn up late for a scheduled appointment. I also find it surprising that you have made no personal apology to me. A little bit of understanding and empathy can go a long way towards resolving an incident of this nature yet the only person in your office who attempted to improve the situation was your intern, Matt. He went out of his way to try & find a ramp, he offered us hot drinks while we waited, he was polite and he apologised in person at the time and via email later. Ms S would do well to take note.

I have been in touch with Matt about you visiting me at my home. I would hope that this will happen as soon as possible as the matters I wish to bring to your attention have time limits attached. In the meantime, I look forward to receiving your response to the points I have raised.

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.

PCT update

For those of you who are interested, this is the letter that I sent to my MP, Rob Wilson, last week:

Dear Mr. Wilson,

Thank you for your letter of 27 July 2011 in which you informed me that you were in contact with C. W., the Chief Executive of NHS Berkshire West, regarding a letter which you received from my consultant neurologist, Dr. R. H., of UCL.

I very much appreciate your attention to this matter to date. To ensure that you receive an accurate representation of the facts, I have attached a chronology of my dealings with the department in charge of Continuing Healthcare at NHS Berkshire West. I apologise for the length of the document but, as you will note, it took me 18 months of extremely hard work to achieve being assessed correctly as to my eligibility for Continuing Healthcare funding.

I have also emailed you recently regarding an inquiry by the All Party Parliamentary Group on motor neurone disease (MND) which found that many patients are not receiving access to specialist palliative care and are being left to suffer the debilitating effects of the disease alone. I wrote asking you to sign the Early Day Motion 1943 and to write to the PCT to make them aware of the APPG’s findings.

I would therefore appreciate being able to meet with you to discuss not only my specific case but also the wider implications of our local PCT withholding vital care from MND sufferers.

Yours sincerely, etc.

Apparently, he’ll respond within 14 days, so I’ll post his reply when I get it. I’m really looking forward to a meeting with someone who a) shouldn’t lie and b) has some power to change the way the PCT behave. I’m probably being naive and stupidly optimistic but I still hold out some hope! If I didn’t I’d have given up years ago.

For anyone who’d like information on the Early Day Motion 1943 and who could email their own MP (hint hint! It takes five minutes and every email raises awareness that little bit more, so please think about doing it), check out MND Campaigns.

Motability and other bureaucratic delights!

I’ve recently ‘met’ a newly-diagnosed fellow MNDer via Facebook (the wonders of social media indeed!). Finally, after ridiculous amounts of hoop-jumping, she’s recently been awarded DLA and is now ordering a new car through Motability.

Having spent nearly eight years with what’s thankfully now become ‘slow-motion-ALS’, I’m always worried about people who are starting their journey. The fact that it’s virtually impossible to anticipate what parts of your body are going to fail next added to not knowing what to do or how to cope when that happens makes it seriously unlikely that anyone will pick a car that will still meet their needs in a few months time, let alone throughout the three or five year contract. I decided to write her an email and explain my hideous experiences. Then I thought I could post it here & hopefully it might help others in a similar position. Here it is.

‘well, i originally got an automatic focus but within months i could hardly get in it, let alone drive it. i then bought a passenger seat which comes out of the car to make transferring easier. i still have it so if you want it at any point you’d be welcome to it.

‘so, a year in, that became too difficult and i spent another year trying to get an early end to the motability contract. i eventually got a kia sedona with a ramp at the back so i could stay in my wheelchair in the boot of the car. now the five years of that are up, i’m finding it really inconvenient & uncomfortable being in the back. if i sneeze or dribble i have to wait for the driver to pull over, get out & climb in the back to wipe me. the suspension is really tight in the back for the lowered floor which means that now i’m weak i bounce around in the back quite painfully. i’ve hit my head on the ceiling, bitten my tongue, come out of my chair, etc. a few times. it’s horrible.

‘this time i’m getting a VW transporter that is adapted for me to sit in the front passenger space. there are smaller up-front WAVs available – you don’t have to have a bus! i just need the space for my equipment when we go away.

‘if you get a wheelchair accessible vehicle – WAV – you can still drive or sit in the front but when you lose your ability to do that you can relax, knowing whatever your needs are the car will still work for you.

‘i’d be very happy to help you in any way i can, maria. if we have to endure this hideous disease then we need to get what we’re entitled to!’

As an addition, please message me if you would like the retractable front seat. It’s in my mum’s garage. She wants rid and I’d far rather someone was using it!