I wasn't going to make this public but if it can help even one other person to not feel alone or to not give up then it will be worth it.
You might be wondering who this ass of an individual is that has hounded me to the point that a few weeks ago I was physically sick from all the stress? But it's not an individual, it is in fact the Government's
appointed Health assessment team.
I have numbered the sections of what's happened up to this week, 24 to be precise, to keep it simple to read, although you might still want to grab a large coffee and some biccies?...
1. As many of you know, My main conditions are Myalgic encephalomyelitis (M.E) Fibromyalgia, Osteoporosis, & Scoliosis? In january I was sent the usual Health assessment papers to fill in. Anyone with sickness/ disability is required to fill in these forms every year or so to keep receiving help. Most people are then called for a Physical health assessment too and I always ask to have a local assessment in Watford or home visit. They also send out a form to your GP, and my Doctor also asks them to see me locally or for a home visit.
There are about 20 odd pages with a number of questions on each page that you are required to answer, with just a small box for your response. However, they give points for every section which when added up will determine whether you will continue to receive help or not, so it is necessary and quite common to have to write an extra 5 + A4 pages to give them an understanding of what life is like on a daily basis. They ask everything, right down to your toiletry habits and needs .
It's humiliating, and soul destroying and usually takes me just over a week of using what energy I have, writing a little every day until it's all completed. Not how I was expecting to start the year ...... Yaaaaaay! Happy New Year.
2. On 8th March I received a letter from them, completely ignoring everything my doctor and I had written and asking me to attend an appointment in Neasden on 22nd March. I phoned the appointment desk straight away and explained to an advisor why I had trouble traveling due to the complex nature and unpredictability of symptoms.
3. The advisor said I would need to get a letter from my doctor explaining as to why I couldn’t travel for the appointment and send it to them. Yet again ignoring the fact my doctor had already filled in a form and requesting me a local assessment then ?
4. So I phoned my GP’s surgery who said I would need to get a copy of the appointment letter and also write a letter to the doctor explaining what I'd been asked to send, and then bring it down to the surgery. So I got that all together and went to the surgery. The receptionist said it had to go through their admin and could take a while but noted it needed to be done by 22nd March.
5. On the 9th March I phoned the surgery again as I realised they’d said “by 22nd march” but it would need to be done before that out of courtesy as to give time for someone else to have the appointment, the receptionist put me through to Admin, I explained again and she said it would be done by then & reminded me the fee was £30 for a doctors letter.
6. Wednesday 16th March I received a call from the GP’s surgery to say the letter was ready, so I went back down and paid the £30 fee, and they offered to just fax the letter straight through to the assessment centre.
7. On the 18th March I received a text reminding me to come for my appointment at the Neasden centre on the 22nd March otherwise they could stop my help. So I phoned the assessment centre and spoke to an advisor about the situation. He checked and said the fax from my surgery had been received Thursday 17th in the afternoon and because it has to go through their (health assessment) admin process it probably wouldn’t be dealt with by my appointment date and my help would be in jeopardy of being withdrawn. He explained that you had to have an appointment in the system at all times while your case is being reviewed, so to give their assessors more time he would cancel the March 22nd appointment and make another for 4th April .
He told me to just sit tight and wait for the decision from the assessors that would also come by letter.
8. I received the new appointment date via letter for 4th April 2016 and sat tight until 31st march when I received a text reminding me to show up for my appointment or my help could be withdrawn. So I phoned the appointment assessment centre again.
9. I explained everything to another advisor who just repeated what the first advisor had told me, that they had just moved the appointment date to give the health assessors time to review my case and decide what to do, and I was to just sit tight.
10. On the 4th April I received a phone call from the health assessment centre to say that they couldn’t see me after all as they were so busy. They realised from looking at their computer that I wouldn’t be coming anyway because of my doctors’ letter, but because the health assessors hadn’t reviewed my case yet they had to proceed as if I was going to the appointment. So they were ringing to tell me the appointment was officially cancelled and another appointment would be made for me and I would receive a letter.
11. A letter arrived for a new appointment date 21st April. So on the 14th April I phoned the appointment centre again and spoke to an advisor to confirm that I wouldn’t be able to attend and why, the advisor suggested that if I hadn’t heard anything by the appointment date itself I should phone the "Further Assessment Team" to ask where they were up to with my case. On the 18th April I received another text reminding me to turn up for my assessment or my help could be withdrawn.
12. On the 21st April my appointment at 11.30 came and went and I still hadn’t heard anything so In the afternoon I phoned the "Further Assessment team" The advisor couldn’t tell me anymore other than they just hadn’t got around to reviewing my case yet, so she would have to officially cancel that mornings appointment and make me another appointment for May 20th to keep my case in the system and prevent my help from being withdrawn.
13. On the 23rd April I received two separate letters, one to say that they were now unable to conduct my assessment on the date originally given of 21st April and they would be in touch to arrange another appointment. The other letter was a new appointment for 20th May at 11am.
14. In the meantime I received a letter from HM Government to say they were changing how payment was made & it would no longer be paid into post office accounts and had to be changed over to a bank account or building society and once I'd sorted that out I had to ring them with the details.
After sorting all that out, I rang them only to be met with a series of security questions which I had no clue to, while the caller waited, I had try and find all the answers required. Then I was informed I’d have to go to the post office and get a closure form, fill that in and send it off. I went to the post office only to be told they didn't hold the form and i'd have to go to a main post office. Nothing like making things easy for the sick and disabled?
15. On Saturday 7th May having woken up to sunshine a dark cloud dropped through the door in the form of a letter from the Health assessment centre to inform me they had finally made a decision and they were rejecting my doctors evidence and as far as they were concerned the appointment still stood and I had to ring them to arrange for them to send a taxi. However if I wished to send in more evidence from my doctor for them to reconsider I could do. Today I was physically sick & couldn’t stop bursting into tears from all the stress that has built up since this all began. With the constant threat of help being withdrawn at any moment , dangled over my head like I was some badass criminal , life has been on hold since this all began. I use alternative therapies to help with my long term conditions, because the NHS can only give short (few weeks) treatments, they also won't give antibiotics for the constant infections and viruses because they say it just wouldn't work . I pay for it out of the help I receive, but i've had to save it instead, incase it suddenly stops, and I have to end up living off my mother :(
16. Despite being sick and feeling so low, once again I had to sit and prepare a letter to a doctor whose name I don't know, to ask for help. My doctor left at the end of March to take up a position abroad, & although the surgery will be allocating us all a new one at some stage they said it will be months before that happens.
There is no guarantee the new doctor will be able to say any more than my original doctor or that the health assessment centre will accept it even if he does.
17. Although my illnesses aren't evidently visual, like oxygen they are there, and I have to deal with the multitude of symptoms every single moment of every single day. I didn't have a choice on getting ill but I do have a choice of how I handle it and I try to stay positive, cheerful and groomed, that’s all I have left, to look the way I always used to look before illness struck and I lost everything . What’s the alternative?
18. As predicted my GP’S surgery phoned to say the new doctor who has taken over is unable to help further than my original GP already has because he said he has never even met me and doesn’t know me .
19. Despite everything already explained, on the 9th May I receive a telephone call from the Health assessment centre to say they are calling to arrange the taxi to come and get me for my appointment. Again I explain why I won't be attending, and the advisor says she can only pass the information on.
20. On 18th May I get a text reminding me to turn up for the assessment on 20th May or my help could be withdrawn.....you don't say? So I phone the health assessment centre and once again explain the situation of why I won't be travelling to Neasden and the advisor says in that case when the taxi company call I need to decline it and then I will receive a form from DWP which I’ll have to fill in and explain why i'm not attending the assessment and then they’ll decide what to do. I point out the fact that I’ve done nothing but explain since February but nobody’s taking the blindest bit of notice of me or my GP. The male advisor just keeps repeating the same set of instructions and I’m not getting anywhere.
21. On 20th May I Get a call around 11.30am from what starts off to be a seemingly friendly female advisor who refers to me as “sweets” and says she’s phoning from the Neasden centre and did I realise I had an appointment at 11 am? and I said “yes” she then asked me if I was coming and I said “No” and ?.......yes you've guessed it, I explained everything to her again. She ignores what I’ve said and continues to tell me that they are all very nice at the health assessment centre and that I had nothing to worry about, everyone was nice and friendly and they were even offering to send me a taxi so I really needed to come as they just wanted to ask me a few questions that’s all.
I pointed out that it had absolutely nothing to do with whether they were nice or not, it wasn’t even an issue, it was about me being unable to travel distances because I have trouble with the motion of a car making symptoms even worse. She seemed irritated and began asking if I went to doctors and hospital appointments and before I could finish answering she spoke over me and continued to press on if I can walk and I said yes, but explained it varied from day to day. at my worst I’d be in bed, other times I can walk but the distance depends on the day, and she said "well then, if you can walk you can get about so you need to come"
As I continued trying to explain some more, it was evident she wasn't interested and once again interrupted by asking if I went to other appointments, physiotherapists, or some other place. Tired of trying to explain while she talked over me I said there seemed no point in trying to explain any further because it was evident nobody was listening, and it seemed they were even branding my doctor a liar.
It was then she told me that my doctor had written in his evidence that there was nothing wrong with my mobility, that I could get about absolutely fine and that he felt there was absolutely no reason to stop me from attending the appointment in Neasden.
I told the advisor I was really shocked my doctor would say something like that and couldn’t understand it because him and even my previous doctor were extremely understanding of how my condition affects me over the day .
She said “well he has, in the evidence we received from your doctor which I’m looking at now, he says there is absolutely nothing wrong with your mobility and that you can get around so if he says that ,then you know? You need to come”
I asked if she was sure this was my doctor she was talking about and she said she didn’t know the doctors name because she couldn’t see it, just part of the letter he’d sent in as evidence which she could see on screen that was saying there was nothing wrong with my mobility and that If my doctor was saying I was fine, then I was fine and needed to come to the appointment.
I stated again this was not true and that I’ve had the same illness for 26yrs, so I couldn’t understand why my doctor would suddenly be saying that now, and she said maybe it was because I’d had a change in medication or something that had improved my condition? I said that wasn’t true either, and then things sunk even lower along with her tone that was very intimidating.
she said that I needed to think about what I was saying and be veeeeery careful because they ( the health assessment centre) were just trying to help me but if I was saying I wasn’t going to go then it would be out of their hands and they couldn’t help me any more. I was exasperated at this point but stated once again that I couldn’t go and she said In that case it was now out of their hands and I would get a letter from DWP and will have to explain myself to them now and they will decide what to do with me & whether or not to withdraw my help.
22. Extremely upset I came off the phone and phoned my GP’s surgery and explained what had just happened to the receptionist, she got my details up on the computer and very crossly told me that the advisor at the health centre had blatantly lied and had no right to say that because my doctor hadn’t said any such thing. She read out what my doctor had said, that I had been severely affected by Myalgic encephalomyelitis and required a local or home assessment and if they wanted more information not to hesitate to contact him. The receptionist says she was running a copy off for me as we spoke and that I could go and collect it to send/show to whoever needs to see it.
23. I came off the phone and phoned the health assessment centre back and spoke to a different advisor. I told them what the previous advisor from the Neasden centre had said to me and what my GP’s surgery had just said about it being a blatant lie, and the advisor said she was very sorry but she couldn’t comment but she was already making a note of it on the computer as we spoke and that’s all she could do.
24. Wednesday 25th May at lunch-time I received a letter/form from DWP asking me to fill it in and explain myself to them for not attending the appointment, and also explain why I didn’t tell them straight away when this first began?........Really? Reeeeeeally?
They said I have to return the form immediately with any evidence & further documents to support my case in the second class envelope they'd supplied and it had to be back by 31st May otherwise they might withdraw my help. It's also a bank holiday weekend so the chances of them receiving it in time are fairly slim? but once again I had to ask my mother to help me get this together and then on Thursday 26th May go to the post office and paid to send it next day delivery in the hope that it will reach them by the date they require. Now I will have to sit and wait again.
There are so many issues with the Health assessment in its current state that's designed to hinder not help the sick and disabled it's also evidently designed for us to fail. Why ask us and our doctors to fill in forms only to dismiss and override it all, in turn branding our doctors liars?
What are we meant to do? Just keep on explaining over and over and over again while nobody listens? keep battling a cruel impossible system while battling our health problems until finally going over the edge ? This has been tantamount to bullying thats' had serious consequences on my health & affected my condition badly, While also putting unnecessary stress on my mother.
This isn't just about me, it's happening to others on a daily basis all over the country.
I have contacted my local MP Richard Harrington who I have a lot of respect for, however he has passed my case to his assistant, so while exploring other avenues, I will also be looking to connect with him directly at some point on this issue.
I consider myself a fairly tough cookie but this has pushed me to the edge and its not even over yet, but what concerns me the most is someone with less resilience or with mental illness could quite easily end up committing suicide with the shocking way this has been handled and I will not sit back and allow that to happen.....that is why I have gone public over this, & despite being in a relapse right now I intend to keep fighting, not just for myself but for those that are vulnerable and unable to. I will be putting in an official complaint next week and intend on taking things as far as needed to change this draconian & bullying system once and for all.
Thanks for reading
Stay Blessed x