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.
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  • 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.

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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?

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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.

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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.

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    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.
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    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.

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 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 ?)

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

Just a quick post to say it’s our PIP anniversary this week.

Oh joy.

What is a PIP anniversary, you may ask?

Well it was on the 21st of May in 2017 that I started our quest for PIP by calling the DWP on Husband’s behalf to start the process and request the form.

So it has now been over a year since we started this journey.

And we are still yet to receive a court date for our tribunal hearing.

Genuinely wondering what happens to people who don’t have anyone to support them while they wait for these things. Or if their payouts are delayed or stopped.

If you want to read about our experience thus far with applying for PIP for Husband, you can do so 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.