A Snarky September.

What a month it has been.

September has been a month of contrasts for us.

Good things that happened in September were:

I started a new job, which I enjoy thus far, and can see myself staying at for the foreseeable future. I can walk there and back which is good for me.

Husband was finally, finally awarded PIP. All in all it has taken us 15 months from when we applied, to get to where we are today.
I am sorry if it sounds dramatic and it’s probably because I am relatively young and have yet to experience many things in my life. But the process of applying for PIP with Husband and having to fight for it has changed me as a person. I feel different now and can’t quite put my finger on it. I think it’s feeling more cynical now and distrustful of government agencies.

Our bathroom was renovated.

Things that could have been improved were:

That this month has been Skintember for us, self-inflicted, but all the same. I have spent four weeks being sensible and taking stock of what we have in the house and using up what we’ve already got, and  generally finding different ways of not spending our money.

One good thing is that I’ve used this as an opportunity to learn how to make new food, and being inventive with what we had in the house. I made rice krispie cakes using a pack of rice cakes I didn’t want to throw out. I have learnt how to make crumble, and how to make Veiled Country Lasses.

Husband’s mood has been low.

…..

Onwards, then, to Austerity October (thank you to Hip Roof Barn for the suggestion), in which I need to celebrate my birthday (including bringing a cake to work as that’s what they do there) and see my sister in London for a week. Hee.

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Applying for PIP: Our experience, part 8.

Sorry for the delay in posting this, but spent all of Wednesday and some of Thursday supporting Husband as his mood has been quite low.

I am very, very pleased and relieved to tell you that we’ve had the letter from the court, following the tribunal hearing last week.

They have overturned the DWP’s decision and awarded Husband PIP.

He has been awarded standard rate mobility, 8 points, and daily living, 9 points, which equates to £80 a week if the Citizen’s Advice website about PIP is on the money.

It has been backdated to the beginning of May 2017. And Husband has been awarded it to May 2022.

The letter we received explains that it has sent a copy of the courts decision to us and one to the DWP. It does say that it does not enforce the decision made, so it can’t help you with ensuring the benefit is paid. This also means that if they rule that you’ve been overpaid, they won’t help the DWP recover the money.

If you are unhappy with the decision you have one month from the date of the letter to write to the tribunal to explain why, you can ask for a decision to be set aside if there was some error in the proceedings or a technicality.

Not that we will be doing that! We are so pleased that it’s now over and done with. And I am so delighted that they have backdated it from the day we started this process, and that he’s been given it for four years. That’s four years I don’t have to think about it or worry about how to pay for things.

The counselling Husband has been receiving this year has been incredibly helpful and is something that will carry on until further notice. It’s been totally worth it.

However it’s also something that has wiped our savings out completely. But this PIP payment he will receive will help cover the cost of that every week.

Just opening that letter and reading it, I could feel a stone fall from my chest.


Our tribunal hearing was set to be in the afternoon.

The night before, I found out something smart-casual to wear, and went over our PIP paperwork folder, adding in the printout of Husbands medical record. I also ensured I found out a notepad and several pens, in case there were things I wanted to add after the panel had finished asking Husband.

The day of the tribunal hearing, I let Husband sleep as long as possible, before getting some breakfast going.

The gent representing us from the advice service asked us to be at the court half an hour before. So we set off in good time, remembering not to pack a drink as they would not let you take it in.

It was forecast to rain so we took an umbrella. Which was then confiscated by the security staff once we entered the building, as it could be used as a weapon, and could be collected on our way out again.

Husband was growing nervous and feeling hot under the collar, so we went to the cafe and got an ice cream and a cup of water for him. I then went out into the lobby to find our representative and Husband’s mother who was also accompanying us.

Once we were all present, we had a look at the board to find out what room we were in, found the room and then sat down in a private room next to it to just chat about how things were. A court attendant then came to the room and took our names down and our relationship to Husband, and let the panel know we had arrived.

We were ushered in to a room where three ladies were sat on one side, and there were seats for us on the other side. Present at the hearing was a judge, a doctor and a lay person with experience of Asperger’s Syndrome.

The panel started by introducing themselves and explaining to Husband that they were there as a neutral party between the DWP and us, to listen to us and examine the evidence presented by the DWP and by us.

All in all, we were there over an hour. It’s one of the most intense hours I have ever experienced. The panel wanted to hear from Husband first and foremost. If there was anything we felt had been missed out and would be helpful to let them know, we would get a chance to say that at the end. So paying close attention and taking notes was crucial, as this was really our chance to explain Husband and how he needs support.

The panel seemed interested in Husband and what he had to say, and seemed to value the input of Husband’s mother and myself.

What was also invaluable was that they seemed to have a knowledge of Asperger’s Syndrome and how it can be challenging – in comparison to the lady who assessed Husband who I think did not understand that it’s a spectrum and that people fall in different places on it, and will have different support needs depending on that.

One series of questions that have particularly stuck with me was when the lay person asked Husband about work and what that had been like, and engaging with people there. She asked if he had formed friendships with his colleagues, if he went out with them or if they invited him anywhere. Husband very pointedly and clearly said no. She then asked if the children where he worked engaged with him and talked to him and he said a clear yes. She listened with a knowing look in her eyes. It’s hard to explain, but it is as though she understood very well how not just Husband but how many people with Asperger’s Syndrome can find it challenging to engage at work. Or how people simply just don’t do it.

She then asked me if I had anything I wanted to add. I explained how Husband finds it hard to make small-talk and knowing when the right time is to jump in to a conversation. And knowing what to say, especially to someone you don’t know very well, how to start a conversation on the first place.

And how this all creates a barrier for Husband with regards for talking to people and establishing relationships and friendships.

I explained how with one notable exception, Husband’s colleagues had never engaged with him or taken an interest in him, invited him anywhere or initiated a conversation with him. On his last day at working at his previous job, nobody from his team came to say goodbye, even after working there for five years. Not even one. There were no cards and no presents, no nothing, and while I understand that it’s not the be-all and end-all, it’s normal acceptable standards of politeness.

It was the children who came and said goodbye to him and said they would miss him, three of which had made cards for him.

I finished by saying that it makes for a very lonely existence at work. You just go there and do your thing, but you’re just present. You don’t form relationships or friendships with anyone, and for the most part Husband’s experience has been that nobody has wanted to even try to do this or make the effort to at least understand.

All in all, going to tribunal was a good experience. I felt the panel were interested to hear from us and took on board what Husband, Husband’s mother and myself had to say. We were there over an hour and when we felt we had nothing else to add, they thanked us for attending and said a letter with their decision would come in a few days’ time.


Saturday, Sunday and Monday went by and no letter appeared.

I was trying to do stuff and just get on and be present, but everything just seemed to fade in the background and somehow seem less bright, because of me waiting for this letter.

The gent who represented us was very positive after the tribunal and said he felt it was very, very unlikely that Husband would not be awarded it, given how much evidence we presented and how much information we gave them. But still.

Silver is now a bitter, jaded old woman who has quite frankly had it up to HERE with how Husband and herself has been treated over the last year and a half, and won’t believe anything or consider anything to have any value or truth to it, unless it is in writing.

Tuesday morning we were sat in the living room with a friend who was visiting when I heard the mail flap go. I excused myself and ran to see if anything of any importance had been delivered. Sure enough, one envelope for Husband and one for me had arrived. I tore mine open and skimmed it to get to the important part.

I was so happy.

We have been believed.

We have proven that we are not making Husband’s support needs up. Or how much I do to support him to live as independently as possible, and generally hold the house and our lives together. And how much his family helps us.

We have also established how in effect Capita and the DWP have either lied about Husband, or twisted everything we said or did during the application and assessment to his disadvantage.

Closing thoughts:

  1. This year and a half has brought out feelings in me I did not even know that I possessed.
  2. I now know that the current government thinks anyone with a disability is either a scrounger and a thief, and that it falls to the person applying to prove otherwise.
    God help anyone who doesn’t have anyone helping them through their PIP claim, from start to finish.
  3. Sure, we have until 2022 before we have to reapply. But that does not mean I will just let things go along. I will start documenting now, until 2022, our journey and how Husband is supported by myself and his family, so that when the reassessment rolls around, we will hopefully not have to justify ourselves as much. And as our friend pointed out, because Husband is in the system now, it should be much harder for the DWP to then say he is no longer entitled to PIP.

Sorry if it sounds cynical, but I feel it is best to be realistic about these things and be prepared. Especially after everything we have been through and how long this process has taken.

All the same.

We’ve won.


If you want to read about our PIP journey, you can do that here:

Quick PIP Update.

Applying for PIP: Our experience of applying for PIP, Part 7.

Applying for PIP: Our experience of applying for PIP, Part 6.

……..

Applying for PIP: Our experience of applying for PIP, Part 5.

Our PIP anniversary (Our experience of applying for PIP: Part ?)

Applying for PIP: Our experience, part 4.

Applying for PIP: Our experience, part 3.

Applying for PIP: Our experience, part 2.

Applying for PIP: Our experience – part 1.

Quick PIP Update.

Hi friends and followers (and family?),

Just a quick update as I’m absolutely worn out. We have been for the second part of the PIP tribunal hearing for Husband this afternoon.

We will get a letter with their decision in the post by Monday.

The gent representing us was very pleased with how it went and said he would be very, very surprised if Husband was not awarded PIP based on what he said and what me and his mother said.

Fingers crossed.

 

Applying for PIP: Our experience of applying for PIP, Part 7.

We have a second tribunal date.

After our first tribunal hearing had to be adjourned due to Husband’s distress (plus the big difference between the DWP report and our PIP application), I initially just wanted the ground to swallow me up.

I just was so tired, and feeling so worn out and flat.

I was also quite resentful of the fact that we even had to go through this process at all/

PIP is there to help people with disabilities live a more independent life and to offset the cost of things and services they may need to do this. In theory.

But I have long since come to realize my mistake in initially assuming that a. that the DWP and Capita were there to help us and b. that they genuinely wanted to help us.

Applying for PIP for Husband, being turned down twice and having to now go to tribunal a second time has brought out feelings in me I didn’t even know I possessed. And I’m not even the claimant!

Anyway, I digress.

Back to our regularly scheduled program.

When we came back home after visiting Husband’s sister in Wales, we had received two letters.

The first was the medical report the court asked for, to get a more complete picture. To make it fair on us, we get a copy as well for our records. It asked us to bring it with us to the tribunal when we go.

It was quite a thick document as it contained all the medical information on record about Husband from when we started the process of having him diagnosed with Asperger’s Syndrome in 2014.

It was a bunch of entries with jargon and numbers (probably would make more sense for someone within the system) detailing each appointment and enquiry that has been made regarding Husband’s health. None of the information within surprised me greatly, bar a scanned copy of the document from the insurance company asking for information about Husband’s health when he applied to get life insurance when we bought the house.

One thing that I noticed which I find oddly reassuring is that it says on the majority of the notes put in about Husband’s appointments, that he was accompanied, either by one of his parents or myself.

I hope this highlights to the panel at tribunal that Husband does need support with getting about and going places. Especially going to places he is unfamiliar with, as he otherwise won’t go as it’s too anxiety inducing (take THAT, Capita staff who decided to award Husband 0 points for mobility!).

The second letter we had states that we have another court date for a tribunal hearing. We are going back in on the 7th of September.

It seems they have taken on board what our representative has said, as they said they would contact the court and ask that we would be seen first, to lessen Husband’s stress. According to the letter, we will be first in that day.

Here’s to hoping they will continue to listen to us, when we go a second time.

You can read about our experience of applying for PIP for Husband below:

Applying for PIP: Our experience of applying for PIP, Part 6.

……..

Applying for PIP: Our experience of applying for PIP, Part 5.

Our PIP anniversary (Our experience of applying for PIP: Part ?)

Applying for PIP: Our experience, part 4.

Applying for PIP: Our experience, part 3.

Applying for PIP: Our experience, part 2.

Applying for PIP: Our experience – part 1.

A jumbled July.

July has come and gone and we are now in August. How did we do?

Good things about July were:

  • I had a chance to go home and see my family at the beginning of the month, which was lovely. I visited my mother and siblings, and met up with several people from school, and met my best friend twice. Sister and her husband also sent me home with a lot of lovely food which has helped us a lot.
  • Work has finished for the year which has meant Husband and I have been able to spend more time together as I’ve been home more. The weather has been hot and sunny which I love (and Husband hates). We celebrated our 8th wedding anniversary this month with a takeaway.
    IMG_20180715_201730
  • We were once again under on our grocery budget, even with a £60 online food shop at the start of the month with Sainsbury’s (so naturally I ordered six bags of cat litter, the less I have to carry home the better!). Foodprint has helped a lot on the budget, and I started using Olio. I also went and foraged near our home and found lots of blackberries.
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    Still got some reduced bargains.
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    Foodprint has really helped us live healthily this month.

    IMG_20180720_135139

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    The bread and pastries came through the Olio app which is an app where people share surplus food for free. If I have time to carry on using it I might do a post about it.

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    Went foraging last week and found these lovely blackberries. There is more left, just needs to ripen first.
  • Another things that went on behind the scenes is that I have got a new job! I will work at the medical library at the local hospital in the week. This replaces the library job I have at the further education college (my weekday job). I predict that the work will be more academic (finding journal articles for consultants etc.) and the likelihood of being called names by our users is significantly reduced. I am waiting for HR to agree to a start date and then I will hand in my notice. Another perk is that this job is within walking distance to the house. This is important.

Things that could have been improved about July were:

  • We went to Husband’s tribunal hearing for PIP after over a year of waiting for it to be resolved. However due to Husband’s distress and the discrepancy between the DWP report about him and what we put on the form, the court decided to adjourn to access Husband’s medical records to get a more complete picture. They have 30 days from the day of the tribunal hearing to do this and then they will call us back in. So we are still waiting.
  • Husband has had to have a change in the dose and kind of epilepsy medicine he takes, as the one he was on made the ammonia levels in his blood unacceptably high. This change has left him feeling very tired and out of sorts, and so he has spent a lot of time resting and going to bed early as feeling tired brings on myoclonic jerks.
  • Having time off has meant eating a lot of good food and not moving around as much as I usually do, so have gained weight. Hopefully this will shift when I start my new job as I can walk to and from work, combined with bringing healthy lunches to work again. At my former job we have a standing desk and I will miss that sorely as, let’s face it, a lot of people, me included, sit far too much during our day.

I wonder what August will bring?

Applying for PIP: Our experience of applying for PIP, Part 6.

So.

Last week we had what was supposed to be our tribunal hearing for Husband’s PIP claim.

We had a letter through the post, giving us a time and date to come to the court for the tribunal. It also asked us to send through anything else that could be used as evidence so the court had it at least 7 days before the tribunal. They also asked us to bring the appeal papers we had been sent (the huge wad including the DWP report about Husband) to the tribunal. Further back it explained how we could claim expenses if we needed to for transport and food and drink but none of that was relevant to our claim.

I duly went and got copies of two of Husband’s letters from his epilepsy consultant, and one letter from his therapist and one from his employment support worker supporting his claim, and sent them to the court using recorded delivery.

A few days later I had a reply from them confirming they had received our paperwork.

The night before our tribunal date, I went upstairs and got all our paperwork out. Beforehand I had bought a large ring binder and a big pack of punched pockets, and I sat and meticulously put every page of our claim and anything I had photocopied out in there in chronological order to make it organised and easy to find.

I also found out something smart-casual to wear, and our passports in case we had to identify ourselves while at the court. I had never done this before and was not quite sure what to expect.

The day of the tribunal hearing, I got up early and got myself ready and made us something to eat, letting Husband sleep as long as I could. We set off in good time and got there in advance to meet Husband’s mother and the lady who is representing us from the advice service.

At the court, we had to go through a metal detector and we had our bags x-rayed. My bag was pulled aside as the security guard had spotted liquids in there, which turned out to be my nose spray. I had been told we were not permitted to bring drinks in so I didn’t. Our representative had to leave her bottle of perfume at the desk and reclaim it once she left.

Once inside, it was as hot inside as outside which was really affecting Husband and making him feel ill. There was a small cafe so we went to get a drink and sat down outside in the foyer, waiting for Husband’s mother and the representative to come.

There was a notice board where the cases being heard that day were listed and I found ours quickly enough. Two cases were being heard before us that morning.

Husband’s mother and our representative arrived and we went up to the court room to wait outside. We were told that the second case was being heard then and that they were quite behind on schedule.

At this point the reality of what was happening really hit home for Husband. Combined with it being too hot for him, he started becoming increasingly distressed. The way he does this is by withdrawing into himself, and not speaking and making eye contact. He went and sat himself somewhere quiet to try and calm down, while I sat down and was told what to expect by Husband’s mother and our representative.

She explained who the people in the room would be and that we must not jump in or interrupt, as the panel would be interested in hearing what Husband had to say and his side of the story. The panel would give us a chance to say anything we felt was lacking by asking ff if we had anything to add,  so we were told to take notes.

She did say however that she felt we have a strong case because of the discrepancy between what we have said and written, and what it says in the DWP report about Husband.

By the time it was finally our turn to go in, we were 40 minutes late. Husband was at this point very distressed, not making eye contact most of the time and barely speaking.

It was a smallish room, with a big table and three chairs on either side. There was a desk in the corner where the clerk sat. She brought water and cups into the room as you are not permitted to bring your own food or drink into the court room.

Presiding was a judge, a GP on her left and a lay person on the right. Interestingly there was no representative from the DWP present.

The person representing us asked the judges to pay particular attention to several points in our claim where the discrepancies were quite big.

Before we even got into the claim, the panel wanted the GP to ask Husband some questions and specified that they wanted to hear the answers from him, and that we would get a chance to add anything we felt was appropriate once he had answered.

The GP asked Husband about his part time job and how he gets to work, and if he goes anywhere else in the community. She was patient and spoke to him in a friendly way but at this point I could tell Husband was visibly shaking and so he spoke very little, making no eye contact at all. He did manage to say that he doesn’t go anywhere else when asked if he would go anywhere else apart from work or the local shops.

This went on for about ten minutes before the panel said they wanted a break to confer and sent us out.

We waited outside the court room, when the clerk called me and Husband’s representative back in. The panel informed us that they felt that because of the way Husband presented and due to the discrepancy between our claim and the report from the DWP, they wanted to access his medical records to get a fuller picture. Therefore the court would adjourn for the day. Our representative pointed to the detailed report from the psychiatrist who diagnosed Husband with Asperger’s Syndrome and asked if this would not be sufficient, but no, this was not enough in their view.

The court now has 30 days to get the medical records to view and we will then be called in again to continue with the hearing.

We queried this with the representative after we had left the court premises; she was quite surprised as she had never experience this happening before, but did explain to us that there would be a new panel reviewing the case and everything within it. She also explained that although we had to consider if returning would cause Husband to become distressed again and if that was worth it, she had to make us aware that the success rate for PIP tribunal hearings is higher when the claimant is present. Her prediction was also that we would be seen quite promptly once the medical records had been obtained. In addition to this to lessen Husband’s anxiety she would request that we would be the first hearing of the day, not the last, in case the previous two overran. This will hopefully save us waiting around, making Husband anxious.

Husband has thought it over and although he does not like the thought, he is nevertheless prepared to go back and attend the second tribunal hearing.

——————————————————————————————————-

TL;DR: We’re still waiting.

If you want to read my previous posts about our quest for Husband’s PIP claim, you can do so here:

……..

Applying for PIP: Our experience of applying for PIP, Part 5.

Our PIP anniversary (Our experience of applying for PIP: Part ?)

Applying for PIP: Our experience, part 4.

Applying for PIP: Our experience, part 3.

Applying for PIP: Our experience, part 2.

Applying for PIP: Our experience – part 1.

……..

Just a quick post to say we attended Husband’s PIP tribunal today.

Due to Husband being so very nervous, and the huge discrepancy between the report from Capita and what we said and wrote in the application form, the panel made the decision to adjourn as they want to view his medical records and meet with us again once they have done this.

TL;DR, we are still waiting. I will do a longer post but just feeling very flat today.

A jovial June.

Gosh where does the time go? We’re already in July!

Good things about June were:

  • The weather has been lovely and sunny – well, that is, for me. Husband doesn’t tolerate the heat well. It does help my mood, I can really tell, when it is bright and sunny outside. We had a lovely morning in Wollaton Park and I got a chance to see NTU’s Brackenhurst Campus. I have done so many loads of washing as I can just peg them out.

    IMG-20180616-WA0001
    At least the Cat is enjoying the sunshine.
  • We’ve tidied up the front garden and had bespoke cupboards fitted in the bedroom, lots ot lovely storage for us now!
  • After waiting more than a year, we now have a date for Husband’s PIP tribunal date. It will take place on July 13th. They have asked us to send in anything else we would like to court to consider, so last week I sent in two letters from the hospital, one letter from Husband’s therapist and one from Husband’s employment support worker.
  • We have continued to stay under budget, food-wise. This has been due to Foodprint, buying reduced bargains and saving food from being thrown out. Twice at work this month I have come into the staffroom to find people throwing food away, simply because it was beyond the expiry date – as in they didn’t check to see if the food could still be eaten. They were being dictated to by the date on the pack. I immediately volunteered to take the food home where it was a welcome addition to our meals.
    IMG_20180622_184316IMG_20180616_185645

    IMG_20180618_163218 (1)
    Lots of lovely bargains, helping our budget, and more food saved from the bin from Foodprint.

Things that could have improved about June was that Husband’s dose of Epilim was reduced to help some symptoms he was experiencing – this we had agreed to but it was to be done in a way so I could be at home and support him with it.

As it was, it was done suddenly and it meant he had to stay home from work for five days, and I for three, as he felt too unwell to go in and I didn’t want to leave him that way on his own. Husband is better now but I am quite cross that we were put in this situation as I was very worried about him and there wasn’t really anyone who I could ask about if this was normal and could be expected. In addition to this it meant I lost three day’s worth of wages as dependents leave is now unpaid at my weekday job.

My weekday job seems to be imploding now, with more and more people leaving or looking to leave as it’s becoming harder and harder to work there. I am in the same boat now.

July should be very interesting.

A motley May.

Gosh where does the time go? Have suddenly realised I have not summer up last month and we are almost in July!

Good things about May were:

  • Husband and I had a very positive experience when he visited Occupational Health for a health check. After everything that has happened to us, I have become quite jaded and guarded. So it was so lovely to see that (while I don’t expect everyone to know everything about Asperger’s) the occupational health nurse had made an effort to read up on it prior to Husband coming to his appointment and got an insight into what someone who has Asperger’s Syndrome might need support with.
  • My colleagues and line managers at work were lovely and supportive. It’s balm for the soul when you’re stressed out and the world seems to have it out for yo, that there are people backing you.
  • The weather has been getting progressively better and I had a nice walk one evening which included some foraging.
  • We have continued to be under budget for food and I think once I have done the grocery diary for three full months, I will do a more in-depth post about it.
  • I got to spend two days in London seeing my best friend and her sisters visiting from Norway.

Things that could have been improved about May were:

  • On the 21st of May was our PIPiversary. On that day, one year exactly had passed since we had started the application process for PIP for Husband. Still no tribunal date.
  • Work is becoming increasingly taxing, with challenging behaviour from students, coupled with many policy changes to our service. This has led me to experience some nights where my mood has been very low this month. Some of these policy changes are unreasonable, and some are downright discriminatory. I think what they will lead to, is a significant decline in the number of people using our services.

 

 

 

Applying for PIP: Our experience of applying for PIP, Part 5.

You can read the previous posts about our quest for PIP here:

Applying for PIP: Our experience – part 1.

Applying for PIP: Our experience, part 2.

Applying for PIP: Our experience, part 3.

Applying for PIP: Our experience, part 4.

Our PIP anniversary (Our experience of applying for PIP: Part ?)

Houston, we officially have a PIP appeal date! This is not a drill!

We have had a letter through today from the Courts and Tribunals Service to say Husband’s PIP appeal will take place on the 13th of July.

1 year and two months after we started the application process.

It also says that if we want to submit any further evidence, we have to do this no later than 7 days before the court date.

Right. Best get on, then.

You can read the next installments in our series, the Quest for PIP, here and here.