Gillian's blog

9 May 2013

The DWP do not work quickly! Or even at anything approaching efficiency. All I have had so far is a brief letter stating that they will reconsider my case. No indication as to when I might here.

The problem for many with the WRAG group is that you can now only remain in this group for 12 months only earnings replacement benefits (i.e. on the stamp you've paid in the past) whereas you can remain in the Support group indefinitely on earnings replacement benefits. After the 12 months you have to move to means tested benefits. That means if you get a small pension or if someone else in the home works for more than a certain number of hours a week, you can lose some or all of the benefit!

In my case it doesn't matter too much either way but I have heard from other people who have been placed in this group and appealed - have still not reached tribunal after 12 months - and have had their money stopped! This government policy is plunging people who are unable to work due to ill health and disability into poverty. At the very least the appeal tribunal times need to be speeded up so that people aren't left in limbo for months at a time.

I will let you know if and when I hear more.

26 March 2013

Well, I heard nothing more from ATOS or the DWP until I received a letter on 20 February 2013 from Job Centre Plus saying l had to attend a work focused interview for ESA claimants. It was with the same adviser as l saw last time on 28 September 2011. I didn't really think anything of it, even though I knew people in the Support group don't have to attend work focussed interviews.

l went along today for the interview and the adviser was shocked to see me again so soon. He looked my case up on his computer and said l see you have been moved back into the Work Related Activity Group (WRAG) and a review would not be due for another 3 years. l said, 'You know more than me then as l haven't had a letter telling me anything about it'.

This is all despite the fact that l will be pension age in January 2015 and l certainly haven't improved since my first assessment in May 2011. If anything l have deteriorated.

Once again l have now got to appeal against the decision as l use all my energies to cope with living with this chronic condition day to day.

l will let you know how my appeal goes .

30 November 2012

Hi sorry for delay in updating my blog but a lot has happened over the last few weeks.

l have been admitted into hospital twice since I lasted posted. My first admission was to Lewisham Hospital on the 8 November 2012 where l got the diagnosis that l had a kidney stone. l was sent home on 9 November 2012 with tramadol to help with the pain and told l would be referred to Guy's Hospital urology department and would be seen within 2 weeks.

A lot went wrong with this referral resulting in me being admitted again to Lewisham Hospital on the 16 November. I had a CT scan and was transferred to Guys' Hospital as an in-patient that night. l am pleased to say that once arriving at Guy's they stopped the tramadol and gave me dihydrocodeine 30mg and paracetamol 500mg. l was also given tamsulosin to take one a day in mornings. l was so pleased that within a few hours my pain was under control and they spoke about maybe having surgery on the Monday to remove the stone as it was to big for me to pass. 

I had to stop my anti TNF therapy in case I needed surgery.

l was prepared and got ready for surgery on Monday 19 November but when the team came to see me they felt that because of the other complications that would go with having surgery due to my AS, they would like to try Lithotripsy Shock Wave Treatment to see if the stone could be shattered. This would mean I wouldn't need surgery. l was in favour of this.

My first lithotripsy treatment was the following day and l am having my second on 4 December. l will have an X-ray prior to this to see if there has been any change to the kidney stone. l am told the success rate is very good in this treatment and I will probably have about 4 sessions. Keep your fingers crossed that this works for me so l will not need surgery. Until its definite that I will not need surgery I cannot go back on to my anti TNF.

Before l get back to my ESA blog please can l make an appeal to all my readers. Do not do what l have done for many months. l put the dull nagging pain in my right side and right lower back down to my AS. Therefore the kidney stone went undetected for quite a while.  So don't just put every pain and symptom down to your AS. Do get new symptoms checked out.

l was due to have a ATOS medical on Tuesday 20 November for my ESA claim. However, as l was in hospital my brother rang them to let them know. Once l was discharged l rang to reschedule the medical assessment appointment but was told my file had been sent back to benefit agency and l would hear from them.

l recieved a letter from ATOS medical services telling me that they cancelled my appointment. The letter goes on to say that they have recieved more information and they no longer needed me to attend this assessment. It states if l wish to discuss my claim to benefits or the reason that l no longer need this assessment, l should call the Job Seeker Plus office dealing with my claim.

When l have called them and can give you the answers l will let you all know.


31 October 2012

l rang ATOS on the 24th October as l was concerned l had not heard anything back from them and the deadline date was the 26th October. l made that sound easy didn't l - l rang ATOS and it actually took me 30 minutes to get through to speak to someone in the correct department to ask had they recieved my forms.

The answer was 'Yes we have we have sent you a letter for you to call to book for  a medical'. l I told them that i had not recieved the letter and was told l would do so soon .When l asked when they sent this letter it was revealed that they had sent it 10 days ago. l requested another one as it was obvious this letter had got lost along the way. She asked for my address so l replied 'You must have my address if you sent me a letter 10 days ago'. l am still waiting for the 2nd letter to arrive.

l had a phone call last week from a very nice chap from ATOS saying he was calling to arrange a suitable time for me to go for a medical assessment. l asked him why l had to have a medical assessment as last year they decided l did not need one and even moved me from WRAG (Work Related Activity group) to The Support Group as they had made a mistake . He said he presumed it was because l had not put enough information on my review form . l explained l had copied information from my last form and had added extra information of medications and that l was no better than last year and if anything l had deteriorated slightly.  l was happy for him to make me a appointment which is on 20th November 2012 as l felt that last year making their decision was made without seeing me and the whole of the registered nurse's medical report was full of inaccuracies.

So watch this space for my next update after my medical assessment.

3 September 2012

Well its almost 9 months since I last blogged and a few days ago l celebrated being 60. Guess what l am up to this week?............Filling in ESA forms again! It feels as if l have only just finished the last ones.

l thought, 'Shall l just photocopy my previous claim form and send it back with a note explaining that nothing has changed except l am now having pamidronate infusions to try and help with the pain and l have had iritis twice over the past 9 months'.

But then I decided I would fill the form out properly, copying what l put on last year's forms. l will send the same doctor's report and supporting letter from NASS and my own additional letter which details a day in my life, just as I did last year.

Under the 'additional comments' section l have added that nothing has changed. My medical situation remains the same no one has found a cure for AS in the past 12 months and even if a cure was found the damage is already done to me and is irreversible.

 If you remember, last year l was initially placed in the Work Related Activity Group (WRAG) but appealed against this decision as I could not see any possibility of my being able to return to work. After a few weeks I recieved a letter from the DWP  saying they had underpaid me and would be paying additional money into my bank. When l called to ask for more information l was told l had been moved into the Support Group. l asked if l had won my appeal and was told no they had re-looked at my case and realised should be in the Support Group. I am still waiting for the official letter explaining this to me.

I hope that this time its going to be much more straightforward and there will be no need for appeals but logic never seems to apply when you are dealing with the DWP. I will keep you updated.

l will officially be a OAP in January 2015 and cannot wait to be free of ATOS Health. It is a good job l am a strong character as these people could really wear you down.

If you are on either your first or your second review please let me know how it goes by using the comments box at the bottom of the page.

13 December 2011

Those of you who look at my facebook page will know that I do try to help and support others with AS who are claiming DLA or ESA. My feeling is that recently more people seem to have been awarded ESA, either being placed in the work related activity group or the support group. It also seems that more people are being awarded ESA without having to attend a medical.

If you are going through the ESA claims or appeals process or have recently done so, it would be great if you could email Sally to let her know the outcome. That way we can maybe give people more hope that their legitimate claim will be awarded.

18 November 2011

I still haven't had my confirmation letter but I found out yesterday that I might well be entitled to a £120 discount on my winter electricity bills through the Warm Home Discount Scheme. I'd never heard of it before but £120 will come in very useful to me this winter so do have a look at the Directgov web page to see if you might be eligible for it too.  Just to be clear, this is a different scheme to the cold weather payments which you might already be receiving.

2 November 2011

You won't be surprised to hear that I have still received no letter from the DWP confirming that I am now in the support group for ESA. However, I called again to speak to them and this time it was explained that my case went for reconsideration because I had asked to appeal. When my case was reconsidered it was decided that a mistake had been made and I should be placed in the support group. If I hadn't appealed I would never had known that a mistake had been mad!

I have now received a reply from Job Centre Plus regarding my letter of complaint. I have uploaded it here for you to read. It's amazing how a letter can cover more than 2 sides of page and never manage to quite give a straight response to any of my complaints.

24 October

I had a very surprising letter last week saying my benefit payments had increased. There was no indication about why they had increased - just a number to call if I had any queries. I called the number and spoke to a rather impatient lady who said that my benefits had increased because I was now in the ESA support group. I asked if this meant I had won my appeal and she said this must be the case. Just to be certain, I asked when I would receive confirmation of winning my appeal and being placed in the support group and she said this telephone conversation was my confirmation.

I then asked if this was the end of the whole issue and I could just remain in the support group on ESA. She said that my case will be reviewed on 18 October 2012. I guess this means I am going to have to start the entire process again on that date, filling out the application form again. I'm really glad that I have kept a photocopy of the original form and hope that you all do the same.

Good luck to everyone who are going through the process and I hope you all get a good result.

13 October

I have now sent off my appeal letter to Atos and I'll see how I get on. I've attached it here for you to look at if you're interested.

Thank you for everyone who came along to the Westminster Stretch, especially Kim and Mark who came specially from Southend. I couldn't have done it without Rob Menzies and all his hard work.

Andrew George, MP joined us for a stretch, along with Caroline Lucas, MP.

You can see our YouTube video of the day here too.

29 September 2011

Today I went along to the Jobcentre for my interview about getting back into work. I had a 10am appointment which meant I had to set my alarm for 5am so that I had time to let the stiffness slowly wear off and prepare myself for the interview.

To be honest I really didn't know what to expect. I thought I might be meeting with a bit of a jobsworth who was only interested in bureaucracy and would push me into attending weekly or fortnightly appointments. I was pleasantly surprised. The advisor was a really nice man who had read my claim form in great detail and appeared genuinely interested to find out more about AS.

He asked me about my medical conditions and about how I spent my day. He explained that he was really concerned when people with long term health problems spent all their time at home with no real interests and was pleased to hear that I spend a lot of time helping others with AS. He felt that I should not have been put in the work related activity group but he commented that if I felt at any point that I would like to try going back to work then he would arrange for me to be supported in this.

Overall seemed to feel that the incorrect categorisation of people by ATOS was causing advisors like him in Jobcentres real problems as it took his attention away from helping people who could genuinely benefit from a return to work.

The outcome was that he sent me home with no specific time to return.

28 September 2011

Sorry I haven't posted for so long but I've been really busy with both trying to get my benefits sorted out and organising a Stretch for NASS event at Old Palace Yard, Westminster.

Talking about Stretch for NASS first, I have been given permission by Westminster to go along to Old Palace Yard on Wednesday 12 October (World Arthritis Day) and carry out a stretching routine. Others with AS will be coming along and I've encouraged people to invite their MPs. If you'd like to come along then either just turn up between 2pm and 4pm for a stretch or go to my facebook site to sign up. If you just want to drop by then we will be the ones in the bright orange NASS T-shirts!

Please be aware that NASS insurance will not cover you for attending this event as I am the organiser. You attend and carry out the stretches at your own risk. If you do have any concerns think about checking it out with your GP first. However, readers of this blog will be aware that I'm no Jane Fonda and we will be just carrying out a gentle stretching routine!

Now, back to benefits. I thought you might like to read my medical report written by a nurse who never met me. Readers of this blog will know that I sweated blood and tears over the form, writing in everything I thought would be relevant. You can judge for yourselves but I really don't feel her report reflects my time and effort!

I did appeal the decision but was told that I didn't include sufficient information for my appeal to be considered. Apparently I can appeal again at any time so I thought I'd wait until after I attend my first meeting at the Jobcentre. Sally sent me some information on my rights at pathways to work interviews and I suggest anyone else in the same situation contacts her for a copy of the guide.

As you know, I always encourage everyone in my situation to write to their MP and involve them as much as possible. I's only if everyone writes to them they will realise just how unjust these decisions can be. Remember - your MP was elected to serve you. I received a reply from my MP and from Chris Grayling and you can read their letters here.

I will post again after my Jobcentre interview.

19 August 2011

I have received a letter from Atos saying that they have assessed my claim and decided that with help and support I will be capable of working and I am being placed in the work related activity group. At first I couldn't decide whether or not I should appeal as others have told me that after a few months in this group lots of people are quietly moved into the unfit for work group. I decided to ask for a copy of my medical report and thought I'd make the decision after reading this through.

When I received the report and read it I felt furious as it was full of assumptions and inaccuracies with no real reason given for deciding that I'm capable of going back to work. Not only this but the person who made the decision was a registered nurse! This means that a nurse has decided purely on the grounds of reading all the evidence that I am capable of work even though my GP and rheumatologist have said I'm not.

I will publish my medical report here in the next couple of weeks so that you can all have a look and I'll keep you all informed on the appeal. As well as contacting my local Citizen's Advice for help I will be contacting my local Disability Information and Advice Line services (DIAL) to see if they can help. I will also be writing to my MP for his support.

9 August 2011

With all the riots happening in London over the past few days, and as my Atos appointment was in Croydon my mother suggested that I give them a call to make sure it was still on. I got through to a call centre to be told that yes, my appointment had been cancelled. This was not because of the riots though, apparently it had been cancelled 2 weeks ago and nobody had let me know.

The good news is that after contacting my GP for more information, they decided they had enough to send my case back to the benefits agency who will now have the final decision on whether or not I will be transferred over to ESA.

I called the benefits agency and they confirmed this but could not find any evidence on my file that Atos had written to me 2 weeks ago. Then, to my surprise a few hours later this morning the postman came and delivered a letter from Atos confirming what I had been told but the letter was dated 8 August 2011 - just 2 days before I was due to have my appointment!

The next step is the Benefits Agency's decision and if I will be classed as:

(1) Capable of working

(2) With help and support will be capable of working

(3) Unfit for work.

And the next step after that? my case will be reviewed in 12 - 18 months and I will need to go through the whole Atos process again.

I just want to give some advice from my own personal experience. Make sure you get a letter from your doctor supporting you, a letter from NASS and write a diary for a day, describing a bad day when you have a flare up and what it is like. And when you fill in your forms if the answer is the same as a previous one, don't write 'as above' but write it in again, it looks like you are making the effort - the more information you can put in the better!

8 August 2011

I had a reply from my MP today after my email about Atos. He says he is aware of the concerns over Atos and he has written to Chris Grayling who is the Minister for Work and Pensions. He'll let me know when he gets a reply and I'll let you know!

25 July 2011

Today I received the call from Atos that I have been dreading, expecting and looking forward to all rolled up into one. I have to attend my medical assessment at 11am on Wednesday 10 August. Keep your fingers crossed for me and do add any tips you might have on medical assessments to the comments box.

In contrast to the negative Leicester Mercury article, there's a very fair and balanced article on the issue in The Guardian.

20 July 2011

Why are the press always misrepresenting people who cannot work due to ill health? There seem to be more and more articles referring to 'benefits cheats'. Have a look at this particularly bad example in the Leicester Mercury. Do consider commenting as I did on the negative tone of the article.

14 July 2011

I went into the GP surgery to discuss the Atos form. My GP's words were, 'Gillian, what a waste of time!'. The Atos form just basically replicates everything in my GP's letter and she just had to re-write everything onto their official form.

Surely it would have made much more sense to enclose a couple of these forms in my original application pack so I could hand them to my GP and / or rheumatology team to complete? Sending the forms out after my GP has taken the time and trouble to write a letter is just wasting her time.

Anyway my GP copied across all the original information and sent the form back so we will see what happens next.

8 July 2011

I heard back from my GP today to say that a very detailed form had arrived for her to complete. She's asked me to make an appointment to come in to the surgery so we can discuss it. I don't know whether the arrival of this form is a good sign or a bad sign. Any thoughts?

Brian, thank you for your comment. I do hope that doing this blog will help others. l never ever thought l would wish myself older but l can not wait to reach 60 so l will get my medications free!

Thinking about appealing ESA decisions (which hopefully it won't come to for me). I thought everyone might find it interesting that figures were released this week by employment minister Chris Grayling, in response to a parliamentary question, revealing what chances you have of winning your appeal based on the number of points you were assessed as scoring at your work capability assessment (WCA) medical.

The figures relate to completed appeals made in relation to ESA claims from October 2008 to February 2010 and have been rounded to the nearest hundred.

In that period 246,700 claimants scored 0 points at their WCA. Of these, 85,000 appealed with 29,000 winning their appeal and 56,100 losing. So, your chances of winning an appeal if you scored 0 points are around 34%. That means  one in three people who were assessed as having no problems whatsoever by Atos were subsequently found to be incapable of work by a tribunal.

In the same period 57,000 claimants scored no more than six points. Of these, 23,600 appealed with 11,100 winning their appeal and 12,500 losing. So, your chances of winning an appeal if you scored no more than 6 points are around 46%.

Just 25,500 claimants scored more than six points at their WCA. Of these, 11,900 appealed with 7,600 winning their appeal and 4,300 losing. So, your chances of winning an appeal if you scored 7 points or more are 63%.

Meanwhile, the number of ESA appeals continues to increase. There have been:

  • 126,800 ESA appeals lodged in 2009-10
  • 197,400 ESA appeals lodged in 2010-11

24 June 2011

It has taken me over two weeks to complete the form and get all the accompanying letters I needed. Filling in the form and writing about my day with ankylosing spondylitis has caused me severe neck problems and pains in my hands, fingers and wrist. I am very relieved it's all finally done.

l received a letter yesterday reminding me that my form must be returned by 6 July 2011.

As I mentioned, I decided to write an accompanying letter of my own about what a day in my life is like. I have included this for you to read and comment on. Do let me know what you think - but nothing too negative please as it's too late for me to change it now!

Along with the letter from my GP, I asked NASS to write me a supporting letter. They are happy to write letters for any NASS member explaining a bit of background about AS and what it's like to live with. If you need a supporting letter for any benefit then do let Sally Dickinson, the Information Officer know.

Once again thank you to all of you that have replied so far. l have taken all your comments and advice on board. l wish these people who make these decisions lived just one day in the lives of many of us with AS. I will update you when l hear back from them. Adam, I have added you on Facebook and introduced you to a few AS Groups. I hope this can help you get support from others and not feel so isolated. Have you signed the petition and put the link on your Facebook wall?

14 June 2011

Today I went to meet with my GP who has prepared me a supporting letter. She said that she had decided to be brief and restrict herself to a simple description of my medical condition. She feels that anyone with any medical understanding would understand after reading the letter that I am medically unfit for work. I only hope the DWP agree!

In addition my GP felt that I should cover my spinal surgery and my knee and shoulder problems in my own supporting letter.

The letter reads:

This lady has the following medical history:

Ankylosing spondylitis, psoriasis spondylitica, osteoarthritis, granuloma annulare, plantar fasciitis, iritis, osteopenia, Heberden's nodes, dry eyes, flatulent dyspepsia, irritable bowel syndrome, difficulty swallowing solids, sleep apnoea and mental breakdown and depression.

l do not feel that Mrs Eames is medically fit for work. Please contact me if further information is needed.

This whole procedure is causing me added stress that is having a impact on my AS. Last week l was so stressed out that l had a severe bout of IBS and increased pain.

10 June 2011

I decided to write to my MP about this issue. I'm not expecting much in terms of a result from this but at least I have highlighted that I have AS and explained what it is. I think it is important that people start to understand what AS is (most people have never heard of it) and the impact it can have on people's lives.

I will put the reply from my MP onto my blog.

9 June 2011

Thank you to everyone who has commented on my blog. Your comments are very encouraging and really helpful. I have been feeling really stressed about this whole process. AS is hard enough to live with without the added worry of possibly losing my benefits and having to start looking for work.

Earlier this week I went to see my GP as the whole prospect of filling out the huge form is just so daunting, especially when I know how much rests on me giving clear and accurate answers that do accurately reflect the impact AS has on my life. My GP said, "You have got nothing to worry about but I do understand your concerns."  She said that she would write a supporting letter and reminded me of some of the other medical conditions which I just live with, like plantar fasciitis, that also impact on my life. Just knowing my GP understands and will support me has made me feel less stressed.

I saw that Anne recommended joining the Benefits & Work website to get all their reports and I wanted to let everyone know that NASS have taken out a professional subscription to this website which means they have access to all the reports and information and can send them all out to any NASS members who enquire. NASS explained that they can't actually just put them on the website for people to download as this is against the terms and conditions of Benefits & Work.

Therefore my top tip is to ask the Information Officer at NASS to email or post out any of the Benefits & Work reports you need. Sally tells me she's put a list of the available reports on the Benefits and AS page.

25 May 2011

Today l recieved the Limited Capability for Work questionnaire. It's 20 pages long! l have to fill this in and return it to them no later than 6 July 2011. In the letter it says that if I don't do this my benefits may be affected.

If anyone has any tips on filling out the form I'd love to hear them.

23 May 2011

My name is Gillian Eames and I am 58 years old. l was medically retired from my job in local government back in 1999 and since then I have been receiving Incapacity Benefit (IB). 

On 6 May 2011 l received a letter from Job Centre Plus informing me of the change from IB to Employment Support Allowance (ESA). The letter said that somebody would be ringing me  within the next 14 days and l received that call on 17 May 2011. In the call they explained to me that they would be sending me forms within the next 5 weeks for me to complete. If l failed to complete the forms and send them back to them my benefits would automatically be stopped.

I contacted NASS about it and they sent me a guide to claiming ESA. On the basis of this l am going to start writing a supporting letter about how my AS affects my daily life and detailing the other complications l have with my AS.  These include iritis, irritable bowel syndrome and plantar fasciitis, l also intend to tell them l will be having a knee replacement in the near future. Finally l will let them know in this supporting letter that l had spinal correction surgery in 2009.

l am also planning on asking my rheumatologist and NASS to write me a supporting letter.