Diary Day 91: In My New Home, Housing Benefit, Patient Group Direction Flu Jab, Telling Pharmacist What MECFS Is

….and hello December!  It’s more like the end of February down here at the moment, the sun is shining in the way it does when the season is changing from winter to Spring and you feel that warmth is coming.

Maybe it’s also my good mood warming me up because I’m firmly ensconced in my New Home, the one that I fought so hard through all the symptoms of CFSME and the entire system being against me to lock down.

Before you ask, yes it’s nice, it’s warm, it’s safe, it’s well maintained and it is really going to be good for my overall health, mentally and physically. I’ve got Nice ME-friendly landlords too.  🙂

I already feel loads different than I did when I was living in the previous hell hole (see most posts on this blog between June and November.) Not recovered, better. There’s a difference. Better is the best I can possibly feel while still having ME. I’m not there yet, but I’m hoping this home will help get me there.

A lot of that difference is physical – I’m not cold, I’m not living in damp and dark conditions, it’s quiet and secluded too. But it’s also emotional. The break being looked after at my silver surfer Dad’s house was so necessary and it was nice to be looked after for a change – the first time since I’ve had ME that someone else has stepped in and cooked meals or paid bills. I relaxed more than I’ve been able to relax since I’ve been ill.

I re-read some of my blog posts from the weeks that I was tackling my previous landlord and finding somewhere to live and I was struck by how they did not communicate how deeply stressful, how much hard work, how much it affected my health and how dark that experience was.

Even when I was writing ‘it’s stressful’ it didn’t adequately explain it. It was really, really tough. I still can’t believe I’ve been so lucky in getting this place. I’m pinching myself, thinking “what will go wrong??”

From the lack of phone calls from any estate agents over the last 2 months, If I hadn’t, I wouldn’t have found anywhere else either.

The experience has left me permanently invested in and informed about sorting out the affordable housing problem in London and talking about and helping anyone find housing on housing benefit in my local area.

Letters will be being written to my local MP, I’m going to use my newly found stable living environment to Get Active, or Get As Active As I Can, more like. This experience will mean something……

Cut off from everything

I was without internet or a phone for ages after moving. When I resurfaced I found out the country was bombing Syria and the North was experiencing massive mega floods due to Hurricane Desmond. It was as if while I did my thing, under the radar, the rest of the world chose to go through this big, huge stuff too.

It’s really been a time of change in the world and for me too. The Parisian bombings were appalling – and those are the last big news stories that I recall.

I’m still catching up with world news and so this post will seem a little bit disconnected from all that. I’m not in touch with any new MECFS news either. I’m sure there must be loads. Let me know if there’s anything essential.

How to move home when you have MECFS 

This is one for the ‘everyday help guide to having ME.’

I can sum it up in 3 parts:

Part 1 is to get rid of every single item you have in your possession that you don’t need. Be ruthless and brutal. Cull like you’ve never culled before. Imagine you are going travelling around the world for a year – ‘cos after you’ve moved you’ll feel like you’ve done just that with all the pay back symptoms – and reduce everything you own accordingly.

Part 2 is to make sure that wherever possible, you don’t have to pack, lift or carry any item at all during your move. Pack in categories of stuff like “bathroom” and “bedroom” and label the boxes that way.

Small boxes are easier to unpack and recycle. Suitcases are better to trundle things in and the ones with handles and wheels are great. You can drag those around behind you when you are feeling terrible and they’ll easily follow you. Get people to help with your stuff, hire people to do it if you can.

Part 3 afterwards you will be tired, you will be grumpy. I bit the head off everyone in a 5 mile radius. Unpack in priorities – I did my bed first, even before putting loo paper next to the loo or hooking up the kettle. Next was my sofa. I used both all the time resting while I was unpacking.

Because I’d done 1 and 2, I got 3 sorted out quite quickly. In 2 days. Bingo.

Housing Benefit Rapid Reclaim and New Application 

Now because I’m in a new place, and I had a break, I have to reapply for the dreaded Housing Benefit (HB) and Council Tax relief (CTR).

Now other councils have a system of something called a Rapid Reclaim.This basically means that because you’ve been a claimant before, if you are reclaiming within a matter of weeks, they’ll use the information they already hold for you to process a new claim quickly.

Not my local Council though – or at least it’s a question of the left hand not knowing what the right hand is doing.

I’ve been thinking about what advice I can give from what I’ve learned, because that’s more useful than kvetching about the system.

1. Keep a running notebook detailing everything that happens in relation to your Housing Benefit or Council Tax claim or advice you are given over the phone or in person.
2. Contact the Council, take the advisor’s name and tell them that you will be reclaiming. Get their advice. Write everything down, times, dates, who advised you and what they said. This will be invaluable when you are stressed out doing a house move and you have to reapply. It helps with brain fog too.
3. Write letters confirming what’s been said if you can. Keep a copy of each letter at your end.
4. Be nice. These people might seem like robots but they work within a crappy system not of their own making. I wouldn’t like to work in a Council with all these cuts and they are really up against it.
5. Always give your name.
6. Ask advice. Ask them if there’s anything more they can think of that you will need to do and write that down so you don’t forget!!
7. Ask them if you are still eligible even though you’ve had a break in a claim. Hearing that I was still eligible and finding out that was because my sole income is ESA (Support Group) has been a rock I’ve held onto while I’ve been dealing with filling out their 48 page online form. 48 bloody pages. It took forever.
8. Save that form and come back to it. Don’t try and do it all at once.
9. Phone them if you have a problem with it. They will help you.
10. Evidence: they expect certain evidence from you. They require proof of your ID with your national insurance number on it, they require originals of 2 months prior bank statements and they require you to submit these at a counter. This is really important because some you can send in the post, but some you can’t, so you’ll have to factor in travelling to your Council offices and waiting and submitting them.
11. You will find out – as I did – that they don’t accept copies of documents. I bank online, it takes 7 – 10 days to order bank statements. I wish I’d known that when I was moving because I’d have ordered them in advance.
12. Not got a copy of your benefit entitlement? You can phone the DWP and ask for a copy confirming what you are receiving. This will have your NI number on it which can kill 2 types of evidence with one stone.
13. For God’s sake do the form in time.

The other piece of advice is to do with evidencing where money to pay for your move comes from. Bear with me on this.

If you are receiving benefits, it’s with the understanding that you aren’t working and the DWP requires you to tell them before you earn any money – or you could get sanctioned. 

Now I’m not earning any money, but my family and friends loaned me money to pay my deposit and month’s rent in  advance. This went through my bank account and can be seen by the benefits team when they look at my statements.

I wanted to head ANY QUESTIONS off at the pass! I’ve had my benefits stopped with no warning in the past and it was leading up to Xmas.

It was frightening, hideous and the result of an error at the DWP. When I phoned the Council offices I asked them if I needed to prove where that money came from. The advice I was given was that there may be questions raised about that money.

So, I got all the people who loaned and gave me money to sign a letter I’d printed out saying who they were, what relationship to me there was, how much money they’d loaned me and when.

We then both signed it. Those letters have gone to the Council for evidence as well.

On my bank statements the reference the people used to transfer money was “Re Deposit” this is so the Council or the DWP can easily audit those statements alongside the letters.

When you are on Housing Benefit, moving home is about all this crap too!

I’ve already received the Council Tax demand that is wrong. They send you one automatically that asks for you to pay it. This happens because they haven’t processed your Housing Benefit and Council Tax Relief claim yet.

I have got really upset about this in the past, but this time I told myself: “this is the wrong one before they send the right one..” which meant I have filed it away.

I also got sent a standard form from the C Tax Dept asking for details of the person living at the address. This has also been raised as a result of my moving in and was simple to fill out. They asked for details of the owner, which I’ve provided and it went in the post today.

Being part of this system gives you a real insight into it. Forms, forms and more forms. I haven’t taken my passport to them yet, it’s next on my list.

No Patient Group Direction for MECFS patients for the flu jab at Boots 

My GP practice used to invite me to have the flu jab but – surprise surprise – they’ve forgotten me so over the last 3 years I’ve had mine done at Boots.

Yesterday I went along to the new local Boots and wandered in, filled out the flu jab form and there started a pretty intriguing encounter with the pharmacist. She questioned whether I could have it because she said that MECFS was not a condition listed on something called a Patient Group Direction (PGD) for the jab.

Now why that’s important is that a PGD is a type of prescription that groups together types of patients and allows anyone who falls under that grouping to have a drug prescribed or administered to them. It removes the need for individual prescriptions.

For instance, on the PGD for the flu jab that Boots is carrying out, they include people who have an immunological disorder. I equate having MECFS as an immunological disorder, which is what I’ve told the pharmacists at the Big Boots in the town centre where I’ve had them done before without question.

I have to admire this pharmacist though – she really did her job properly. She asked for my GP details and wanted to phone them to find out if I was included. Before she did that though, she asked what I had.

I went through the usual spiel and she still looked blank until I mentioned Chronic Fatigue Syndrome.

“Ahhhhh ohhhh yes!” she replied, lighting up, “I know, my downstairs neighbour has it. She says that she can’t stand loud noises, is that right?” Then she added, “it’s a very contentious diagnosis. Some people believe it isn’t real.”

“Oh it’s real allright,” I said, looking directly into her eyes, “I caught flu and got a chest infection and I’ve never recovered. It’s like having flu, fatigue Dementia and pain, all at the same time.”

She did react to that description, yes.

Well these opportunities don’t come around that often so I carried on to explain that ME is about many more things than the fatigue and that yes, being sensitive to light and sounds is part of it for some patients.

“But there’s no pills you can take?” she said, before she disappeared out of sight to call my GP.

“I’m afraid not,” I said, “but it’s coming. There’s research being carried out in Norway and in the US which is sketching in the details that, I’m sorry to say, the UK is lagging behind in.”

She rounded the corner to make the call to my GP which I overheard because the walls were so thin.

I overheard her side of the conversation as I rolled my eyes upwards at the thought of what the receptionists at the GP practice would be saying. I heard her say: “right, right, OK, I didn’t know if she was exaggerating, you see…” before she got off the phone and rounded the corner again, syringe and prescription in hand. Obviously the news was positive.

“Good news?” I said, feeling the sort of sea sick I feel when I have fatigue and brain fog and I’ve been standing up for too long. I sat down.

“Yes, “she said, laughing a little. “I was talking to them and they said ‘she can come here and have it done here!” and then we both laughed.

“I see,” I said, ” so logically if I can travel to the surgery and have it done there, then they are agreeing with you administering it to me here!” and she agreed. She stabbed my arm and then asked me about the noise sensitivity again.

By this point I really was feeling quite ME-unwell and my mind was failing me but I tried to use the 5 minutes we had as usefully and clearly as possible.

I explained that noise feels like you are banging your head against a wall and that her neighbour will feel really, really unwell. She asked about TV and I said that speaking from experience I can only watch it in short bursts because if I’m having a bad day it’ll make me feel iller.

I explained about what it’s like being diagnosed – you are lucky if you get a GP who knows their stuff – and I told her about what the NICE guidelines say about care – Graded Exercise Therapy and CBT. I added that the NHS seems so hamstrung by the NICE guidelines that alternative research has been patchy, but the charities do take some forward.

“I’m holding out hope that the US research really does do it for us, ” I said, ” because once that research is published, the UK can hardly be able to continue with this treatment and maybe we’ll have some pills we can take as well.” I added, playing to the audience a little.

“I mean, I caught flu and it ruined me. 3 years on and this is as good as it gets. This will be all I’m able to do today.” I said as I rolled down my sleeve.

“But I’m lucky. I can walk down the road and do this. There are some people who can’t even get out of bed or leave their houses. They are totally neglected. Your neighbour is telling the truth about how bad noise feels..”

The expression on the pharmacist’s face changed again. Something had gone in, and it wasn’t only the jab I had either.

It was good though. I hope her neighbour gets the peace she needs…and I hope that CFSME patients are put onto Patient Group Directions for the flu jab automatically in the future. This needs actioning people….another cause we should take forward on behalf of all those with ME. 🙂

Copyright Lindy, 2015.