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MEA Response to Green Paper ‘Shaping the Future of Care’

I’ve just emailed The ME Association to offer my support for their response to the Green Paper ‘Shaping the Future of Care’. 

If you haven’t already signed the petition to lend your voice in opposition to this paper please take a moment to do so now

Image by Benefits & WorkAt the moment direct payments are made to successful applicants of carers on low incomes and sick/disabled persons with personal care and mobility needs.  This Green Paper seeks to change the system and give the funding to local authorities to adminster care and mobility needs. 

Except local authorities don’t have a good track record of adminstering other schemes and the services they would provide would not necessarily replace how people are able to use their payments currently.

You can read the MEA’s concerns in their response here and they are concerns I share.  So I wrote to them to lend my support and also to give some examples of how I rely on my DLA to help with a lot of things that Social Services couldn’t give me assistance with – so I effectively would lose my assistance from the government.

I would also give a huge thanks to Benefits and Work and their continuing efforts to rally support in opposing this Green Paper.  Without them many people would be unaware of the implications of these proposals and many groups would not be so actively engaging in the debate.


Dear Friends at The ME Association

I am writing to lend my support to your response to the Green Paper on ‘Shaping the Future of Care”,

I am a member of the ME Association.  I have ME and have been ill for 4 years. 

I am in receipt of DLA lower rate mobility and middle rate care awarded in October 2007 to October 2009.  I am in the process of re-applying for DLA as my award is coming to an end.  I am fortunate to have a supportive GP who added weight to my last application.

As someone with ME in receipt of DLA I support your response to the Green Paper and echo what you have said.

My husband works to support us both.  I do not earn a wage, I do not claim Incapacity Benefit or Jobseekers benefits.  I do a little part time self employment as an artist, working when I am able to, but my income from this is very small and would equate to working just a couple of hours each month in a conventional job. 

My DLA is my main source of income and means to support my personal care, mobility and medical needs.

I rely on my DLA to pay for many things for my care, mobility and medical needs which would not fall under the remit of service provision from Social Services. 

Here are some of the things things I rely on my DLA to pay for:

  • prescription medication (a yearly certificate)
  • over the counter medication
  • suppliments (eg. fibre suppliments, vitamins and energy suppliments) which help with symptoms
  • help with gardening as I am unable to do any myself
  • upkeep/maintenance of my wheelchair which I rely on when I have to go anywhere when I need to stand or walk for longer than a few minutes
  • help with fuel bills as I am virtually housebound, being sedentary and having trouble with temperature regulation due to ME
  • thermal clothing to help keep me warm as my mobility problems mean I am sat still for long periods and also for when I do go out in my wheelchair (assisted) during autumn and winter
  • help with broadband which allows me to stay in touch with family and friends which would otherwise be impossible due to my mobility problems and problems with communication over the phone and face to face
  • earplugs for noise sensivity
  • eye glasses which I require because ME affects my ability to focus when I am very ill
  • help with delivery for shopping as I am unable to go out to the shops and so rely on using online shopping and paying for postal delivery

I am delighted The ME Association wil be responding officially to the Green Paper and fully support your stance.


DLA Success!

I have been awarded Disability Living Allowance!  I am so happy!

They have given me Lower Rate Mobility and Middle Rate Care allowance.  Plus they have awarded it for 2 years.  Great news.

I am certain this is down to a strong application with lots of additional information, seven supporting letters/statements from family and friends and a great GP who I suspect wrote a spot on report for the DLA decision makers.

I wholeheartedly recommend subscribing to to anyone considering applying for DLA.  They also provide advice on Incapacity benefit claims.  Their advice guide is just brilliant – it’s easy to follow, it decodes the ridiculously complex DLA form and it tells you step by step how to give the strongest application you can.  They also left me in no doubt that I qualify and that I should apply.

As well as owing a huge than you to the family and friends who wrote supporting letters and stood by me through this process, and a huge thank you to my GP – I know none of it would have been possible without Growler’s help.  He did all the hard work – extracting from me what I wanted to say, filling in the gaps in my thinking/memory and writing up the 50 plus pages of questions and additional information sheets.

I am so relieved not to have had to have a doctors visit/medical.  The letter says my application, further information and GP’s statement was enough for them to make an award.  I have even received the back dated payments already!  Plus it took them just 2 months from me posting the form for them to make the decision – not too bad by government standards!

Now I just have to decide how to use the money.  Especially as I wasn’t really expecting to get it.  Perhaps a gardener, or a cleaner, or part time P.A. to do errands and little tasks … or to save it towards something bigger … an electric wheelchair, a go slow holiday, an electric bicycle … or practical things like taxi’s to get more independent, supporting my huge vitamin habit, investing in more pyjamas, buying a shower seat … or to invest it for bleak rainy days …

Hmmm. A nice problem to have.  Wonderful in fact.  It IS possible to have CFS and qualify for DLA.

DLA: Form Filling

It’s been over a month since I started my push for applying for Disability Living Allowance (DLA).  Since my first steps I’ve had a great response to request for help with supporting statements for my application.  I now have 6 letters/statements and Growlers will make 7!

Some struggled with knowing what to say or how to say it.  But I assured them to say it how they see it, say as much or as little as they were comfortable with and not worry about upsetting/offending me.  I had expected it might be tricky and a bit upsetting.  What I hadn’t expected was to feel touched by what they said.  Even though they were expressing difficulties I have and the impact that often has on them I felt a kind of unity and support in their words.  I feel almost like them being able to contribute to the process maybe helped them a little too?  It certainly liad some things out in the open and made me face that I’m not so good at hiding things as I’d like to think 😉

Having completed parts one (personal info), two  (diagnosis, medications, disability aids) and three (walking outdoors) last week – today we started on probably the most difficult section.  Part four is all about care needs and help you require with washing, dressing, getting in and out of bed, toilet needs, moving indoors, getting in and out of chairs, eating, communication, help with medication and treatments, cooking a main meal, supervision required and hobbies/interests.  I don’t think they’re really interested in that last bit though.

We’ve made it half way through part four which is brilliant progress for me!  Growler has taken lots of notes to type up all the “see attached sheet” bits as the form is not designed to allow you to say as much as you need to in order to qualify.  It’s an infruriating form.

I would absolutely recommend that you don’t fill a DLA claim form out by yourself.  Enlist support!  Local Citizens Advice offices are very good apparently.  Also I cannot recommend strongly enough the guides from – it is well worth the £15 (I think) to subscribe.  But I’d still get someone to help you fill in the forms using the advice in the guide(s).

So it’s looking hopeful to complete the form by Friday – which was the deadline I set to have it done before we go on holiday for a week.  Then I can have a proper de-stress and not mither on to Growler 😉

It’s eye opening.  I thought I would struggle to face how incapacited I am.  The bigger problem seems to be feeling worried about over-stating things.  Maybe that is part of not facing the incapacity!  Oh yer!  LOL. 

It’s easy when you adapt and live day in day out with limitations to see that as normal – because it is YOUR normal.  But compared to how I was, compared to you average Joe, it’s not normal.  Illustrating the severity leaves me mumbling “Yes, but … oh I suppose so .. oh yer you’re right …. oh.” 

Growler is doing a fabulous job of keeping things moving along however.  Thank you G 🙂

I have no idea if all of these efforts will be successful in terms of being awarded something for DLA.  I have no idea if my doctor will give a detailed, rousing supporting statement, or a quick sweep of the facts.  I have no idea if they will want me to be seen by one of their doctors to be cross examined.  I have no idea if they will turn me down, if an appeal will be neccessary, if sitting in front of a panel getting confused and tired and knackered will be required.  And if after all of that if I will still get turned down.  But I’m still going to try damn it!

DLA: First Steps

I’ve been saying for months and months that I intend to apply for Disability Living Allowance (DLA) and not got round to it.  Mainly due (ironcially) to poor health and difficulty in getting complex tasks like filling out a DLA form, done.

 But I’m moving in the right direction now.  I’ve signed up with to access their brilliant (and updated) guide to applying for DLA on physical grounds.

My task in the next two weeks is to read through the guide and start making notes on how I can fill out each section of the form.

I have also emailed family and a few friends today to ask if they would consider writing a supporting letter or statement to go with my application.  It feels like a big step.  Not only do I have to face to realities of what I am not able to do or struggle with – but I am also inviting my loved ones to face it too.

I forget to say this but I would be quite happy with a letter that says “Rachel often stinks and looks a right mess.  Her appearance is unkempt and she often smells as she doesn’t wash very as she is too tired to because of her CFS.”  I mean I wouldn’t be happy that my family think I stink half the time – but it’s true.  And there’s no point pretending to the decision makers that I smell sweet as a rose due to long lavish baths every day when it’s painfully not true!

So, I’m a little worried what the reaction to my email might be.  I’m even worried that I sounded like an idiot as it took me an hour to write it! 

I’m not brilliant at asking for help – especially when that help is “please put in writing formally everything I am crap at these days”. 

But it’s not my fault.  And the money each month could help me to be more mobile, or even (I am half dreaming) to employ a part time gardener or cleaner even … hmmm.  OR spend on feeling not so crappy.  Or on the vitamins and suppliments I take each month.  Or on taxi’s to visit folks off my own back.  Or on all the gadgets I have my eye on in my latest disability aids catalogue.  Oh yes! I know how to live a rock’n’roll lifetsyle!

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