A letter to Jeremy Hunt ✉️

[Aribah-NRAS]

NRAS as a member of the Arthritis & Musculoskeletal Alliance (ARMA) has signed a letter to the Chancellor, Jeremy Hunt, ahead of the autumn statement asking for additional support for those living with long term musculoskeletal conditions to help tackle rising cost of living and fuel costs. You can read the letter here👉 bit.ly/3OjKtsR

[Amnesiac3637]

Ra Ra NRAS and associates! Great appeal letter. Let’s hope this doesn’t fall on the deaf ears of one of the worst health secretaries, now the Chancellor of the Exchequer, we ever had. I was a nurse at the time he reigned………😡

[Runrig01 in reply to Amnesiac3637]

I agree completely. I also nursed during the time he was health secretary. My ill health retirement process was made more difficult because of him. He had instructed officials to decline where possible, to try and solve his retention problem, and keep people working and struggling. If it had just been my AS I’m told it would have been declined, but I had a severe stroke at 52. Although I recovered well physically it has left me with memory issues, which made being in charge of my ward challenging.

Excellent letter though, and hope they take notice though. I use a heat pad when sitting in my chair, but find I’m using it less as I’m concerned re the cost of using it.

[medway-lady in reply to Runrig01]

I can't write what I think of him and I do wonder if we all used power normally could they actually put all the country on prepaid meters or recover the debt by cutting people off as they can't do that to disabled people or where their are children in the house because they would have very few customers if we all got cut off! We are all electric and it'd be fun to see how a pre pay meter could be installed as we've got three phase power supply. My husband is a retired electrical engineer from a power station and has been for years furious that all the warnings were ignored about not enough power is available during peak times and wind would never be enough. Now we are seeing the folly of poor planning and a lack of fore site. I dread to think how some will manage this winter if the weather gets really cold.

[Runrig01 in reply to medway-lady]

it’s worrying isn’t it. All governments are only interested in short term gains, and don’t look at the medium or long term picture. It just seems cop meetings are just a lip service, it’s infuriating. I think there should be more help for disabled who may not be on benefits, but are using electrical equipment as part of their disability, such as CPAP machines, or extra fridges to store medication or special feeds. It’s an added stress they don’t need 🤗

[medway-lady in reply to Runrig01]

Totally agree we live in a world of sound bites and the waste! My broken leg boot could not be reused yet surely it could be sterilised and used again. The crutches were not wanted either and so I've stored them until someone local appeals for some. I wonder at the waste of blister packs rather than bottles of pills, syringes so complicated that NASA probably designed it and its so easy to fill a syringe that I'd be really happy to just have one bottle of Orencia in the fridge and a pack of syringes in the cupboard. The cat is diabetic and I could use her syringes ? very fine needle and £20 for a months supply. Every day I wake up grateful I can heat, eat and afford to drive to the library. lol

[Runrig01 in reply to medway-lady]

agree. I have the same situation with walking boot & crutches in my garage, as they didn’t want them back. The boot did come in useful when I badly sprained my ankle though 🤪. But agree there is too much waste

[AgedCrone in reply to medway-lady]

Until governments of all persuasions stop throwing money at the same group of vastly over salaried grey suits who have no idea what needs doing to rescue the NHS …& what’s worse don’t care…..nothing will change…as Einstein said…doing the same thing over & over and expecting a different result….is a perfect description of insanity….well it was something like that!

[medway-lady in reply to AgedCrone]

Quite right ! how are you ? xx

[AgedCrone in reply to medway-lady]

Not brilliant..came off transdermal patches & out of the blue got massive withdrawal symptoms…calming down a bit now but most unpleasant.How is the walking going….when I broke my ankle I found the aching during rehab as bad as the original injury.Hope you don’t find that.

[medway-lady in reply to AgedCrone]

Just got home and my husband rang the treatment finished bell. Why did you stop the patches ? my mum had her brand changed when one gave her an awful rash but they worked well for her Oestoporosis spine fractures. I'm very well the boot game off several weeks ago and crutches been gone a few weeks now now so back to normal. I was told to continue to use one crutch on uneven ground and did for a couple of weeks but now its back to normal apart from a bit achy and have to go back on the 21 Dec as the leg has healed and ankle well on the way but soft tissue injury takes longer. I did try on some new boots (or tried too) but sadly my ankle is still a bit swollen so I bought some fit flop shoes instead. They are great but I'd really like some new boots. I've seen the GP as well this week but just for a 'chat' about RA and he was nice as usual but it really wasn't needed and so he asked about my husband and how was the treatment going etc. So cold here now and so wet our garden is sodden so we can't plant any daffodils and I'd such a load of bulbs to go in.

[AgedCrone in reply to medway-lady]

I’d been on a low dose of the patches for over a year…& the back was doing well…but it suddenly flared (opening all my removal boxes was not what my physio recommended) so rheumy upped the dose & l reacted.I thought at first I had a bug or flu…..stupidly it didn’t occur to me…until I started itching ….but there was no rash or any lesions on my skin….so I ripped off the patch……rheumy agreed…..& that brought on the withdrawal symptoms. In the past I had come off the lower dose for a month or so to see how the back was….but coming off the higher dose hit the jackpot …..rheumy reckoned ctd under LA was probably not wise…so now that will wait until after Christmas..

I did want to get it over & done with…but my patience would be exhausted if I still felt disoriented & had a painful hand to boot.

Shopping wise I’m forcing myself not to buy anything as there isn’t an empty dress rail, or drawer in the house!I’m still mid clothing cull.

I think I’m now going to try US guided injections for my back …..when I’m back to normal….maybe!

Gosh it’s cold here tonight…electric blanket going on very soon!

[medway-lady in reply to AgedCrone]

My mum had a reaction but the GP said try another brand as it could be the glue and it was. She was fine on the second lot, you should have taken those boxes a lot slower. lol xxx

[AgedCrone in reply to medway-lady]

TBH although they helped my back pain..I didn’t really like being on them…so I decided to rip the stonger patch off..ll& told rheumy the next day….he said I was right because I get neurological symptoms quite quickly & they take ages to settle.My back isn’t too bad….so  I hope I can hang on to get the injections after the ctd

[Hidden in reply to Runrig01]

Completely agree; and surely they are ‘saving’ the NHS money by not living in a hospital…

[J1707- in reply to Hidden]

I had to buy my own as physio department didn’t have any 🥴they no longer have them back since covid

[Fruitandnutcase]

Could we forward this excellent letter to our own MPs to highlight the problem? The more people with any sort of influence who know the better.

[BoneyC]

Thanks. It's about time someone told the Government disabled people need help with extortionate energy costs just as much as some OAP's. I fail to understand how disabled people get £150 yet OAP's get up to £300. Some OAP's don't have MSK conditions.

[stbernhard]

Excellently formulated letter. Congratulations.

[Mmrr]

Thankyou for this

[wb54]

Very well put. My only thought was did they spell his surname incorrectly?

[J1707- in reply to wb54]

😂my thought too. Great letter we are often forgotten. Having to use heating as can’t move enough to keep warm . Fear it will fall on deaf ears

[Hidden in reply to J1707-]

Same. I quite literally cannot move if my central heating isn’t on.

[wb54 in reply to J1707-]

Same position. I also have a CPAP machine that chugs away at night. A couple of air purifiers are on constantly due to breathing issues. I have spent money on all the things you and probably everyone has done, to make life a little more comfortable. I have been, in retrospect, stupid enough to save a little bit to have a comfortable life in the circumstances. Unfortunately, this means testing will probably go against me and I will lose PIP. Hopefully, my savings will be enough before the Grim Reaper comes calling.

[Hidden in reply to wb54]

They are not means testing PIP just yet, but it is no longer a ‘passport’ benefit. Apart from a bus pass if you get the mobility payment.

[Hidden]

They don’t care at all, and will continue to pursue their agenda. Warm Home Discount scheme changes this year (ie. now) will see many with D/disabilities lose out this winter and in the future. * in England

Criteria still not published regarding ‘high energy use’ for previously eligible people on ESA, yet this year’s scheme opened yesterday.

All PIP/ DLA people not on a means tested benefit will no longer receive it. Money going to those ‘who need it most’ is just a headline.

And even more cuts to budgets (including the NHS) are forecast…. 😭

[madme1]

Tried to do this Aribah but it wouldn't open.

[Aribah-NRAS Partner NRAS in reply to madme1]

Hello madme1,

Does clicking on this link work for you 👉 arma.uk.net/wp-content/uplo...

[madme1 in reply to Aribah-NRAS]

I found another one that worked thank you.😀

[SmilerWend]

Brilliant letter, Thank you.

[medway-lady]

It's a nice letter but I think he might fall off his chair laughing. He was the former Health Secretary and caused a lot of the damage. Before that Education Secreaty and the damage his policies did to schools !

The system is broken and not everyone even got the £400 as only C Tax band D and below got it anyway. I've seen a post saying some OAP's got a higher energy allowance amount yet may not have these issues, this is true but they may well have other problems and anyway we paid into the system for the paltry pensions paid. I could not survive on my state pension alone so that extra help would have been vital if I only had a state pension. Some are lucky we do have private pensions which again we paid for, now will be taxed more if the forecast is correct. Around here the cost of living (mortgages etc) is much higher than other parts of the country so should people in the south east get extra? Its far from simple. And don't get me started on the benefits system which favours the rented sector benefiting some landlords at the expense of everyone else. Rant over and now for biscuit.....

[Hidden in reply to medway-lady]

The private sector landlords benefit greatly from John Major abolishing Rent Assessment Panels. I don’t know how people afford to pay such exorbitant rents… 1K a month is considered ‘cheap’ in London. It’s completely insane…

[medway-lady in reply to Hidden]

Just so and the abolishing of the Fair Rent Act and so poor evicted families in one room in dreadful circumstances yet I've seen photo's from a plumber friend of young men in 4 star hotels who use the corridors as toilets yet own apple phones to phone home. What is wrong these days ? we sat on a beach at Dungeness in the summer and watched a rib boat come ashore so called 999 by the time the police arrived all had nearly gone. They rounded up a few stranglers but all were young men.

[AgedCrone in reply to medway-lady]

Wait until you are 80 ML…..you will receive 50 whole pence PW top upof your state retirement pension….then  as you said, this year people born before September 1942….get more for the Winter heating Allowance….I got the letter, but I don’t get any colder than when I was younger….so why give me more money?There is no logic in how these benefits are calculated. If we get the harsh winter we are forecast the paltry sums will be of very littlehelp with utility prices still so high.Too much money was spent on Furlough.

[Hidden]

Thanks for doing this, but unfortunately it may make little, if any difference ☹️. They have been taken to court for not liaising properly with Disabled groups for their ‘Disability Strategy’. They quite literally do not want to know..

[Green230461]

thank you💐

[Tourk]

Nice idea but with a tory government in power hope is all we have.Now it looks like they are trying to blame the effects of there failed policies on brexit. I don't know whether to cry or laugh.

At every turn experts have said their policies will course another recession likely worse than the previous one.

Unfortunately the tories thrive on economic chaos they use it as a weapon against the people of this country. Just as they have deliberately run the NHS into the ground.

So back to the letter asking this government to take the suffering of those in the greatest need being taken into account might give them a good laugh but sadly that's about it.