I have just emailed this 'letter' to SRUK - as a first step to raising the issue of Scleroderma, Raynaud's (and probably other autoimmune condition sufferers) in the event of ing power outages this winter. Do let me know if you have campaigned about this already, or would be interested to do so if it gets off the ground. I'm thinking letters to MPs, to the relevant Ministers, to the press (including the BMJ) and to any and all Rheumatologist consultants/ departments.
Thanks
"Hello SRUK (and possibly RAIRDA)
"I have read in the press over the last few days about Programme Yarrow, which the government has been reviewing in light of the increasingly difficult job of ensuring stability of power across the country. Programme Yarrow, it appears*, kicks in “if there was a complete nationwide blackout” and that these could last up to a week - (optimistically) as energy companies have an undertaking to get things back up and running in no longer than one week.
"Programme Yarrow, it seems “involves prioritising food, water and shelter for the young and older people…. Only hospitals, oil refineries and certain other critical services would be protected.”
"Given the potentially catastrophic impact of Scleroderma-Raynaud’s sufferers of not being able to access sources of heat for even a few short hours, I wonder if SRUK could support an urgent campaign to get us registered as people needing priority assistance (eg being supplied with home generators) under Programme Yarrow?
"I have not considered this before (other than asking my power company a couple of years ago, when I was told that I could only get a priority flag if I was very elderly, which I am not) and I am unsure how it would work, but if young people and elderly people are to be prioritised, then there must be some system for registering relevant disabilities and conditions.
"I do think it’s something that should be raised urgently, and the wider SRUK/ RAIRDA community recruited to join the lobbying effort. As an example, I am currently sitting in my home, with the heating and many jumpers on, and still have to wear rechargeable battery-operated gloves in order to do this typing. Otherwise, after about 40 minutes to an hour, my fingers would be completely white (which I’m told I should never let happen).
"For the possible shorter, 3-hour rolling blackouts for which notice would be given, I could make sure all my spare batteries were charged up ready, and flasks filled with hot water to top up hot water bottles - but that would only see me ok for a few hours at most.
I love what you have written and I am happy to campaign and lobby parliament and write to my mop. You make some very good points and I also use a CPAP machine and don’t want power cuts at night either. What help would you like to get this started?
Brilliant! Thanks so much for responding. I'm going to give it a couple of days to see if SRUK reply, then depending on their response, perhaps we can draft some scripts (letters, press release, social media, emails to recruit friends and family etc) and then start sending them and passing the word on?
I have just read in the new SRUK are putting g the final touches to a letter to the chancellor to raise awareness of the challenges faced by our communities through the cost of living and fuel crisis. This is what you are talking about isn’t it? That might help. See what they come back with.
I had a nice email from SRUK a couple of days ago saying:
Today, as announced on our website, we have launched a Raynaud’s Energy Campaign and have sent an open letter to the Chancellor of the Exchequer. We are calling on the Chancellor of the Exchequer to consider:
• extending the Energy Price Guarantee for vulnerable groups, to include people with Raynaud’s;
• increasing the Energy Profits Levy with a particular focus on the biggest oil and gas companies, such as Shell and BP who have recently posted record multi-billion-pound profits, and using a proportion of the extra money raised to provide financial assistance to those with conditions like Raynaud’s whose health depends on affordable heating;
• including Raynaud’s as a criterion for the annual Warm Homes Discount.
This is only the beginning of our campaign to get better help and assistance for the community during these difficult times. We are currently discussing Programme Yarrow and how best to bring it into the campaign and so when we have a plan of action, we will share it with it you. If you have any ideas or if you would like to get involved with this further, please do let me know.
I replied to her, listing the suggestions I made to you, but saying we and SRUK should best work in tandem, and I would wait to hear more about their action plan and how we can support it best.
Thank you so much for raising this and for your measured approach. It certainly makes sense to wait and see what SRUK are going to do and then to support that. and I'd be happy to help in any way that I can.
The point raised above, about CPAP really made me sit up and think: I have Muscular Dystrophy, which means that I have to use a system similar to CPAP at night,. I hadn't even considered the risk to my respiratory system that power outages would cause...
As well as MD, I have Lupus, Raynaud's and Erythromelalgia.
May I follow you on HU, so that I'll see when there is any update?
A sort of update to this - my sister had an email from her electricity network provider (different to her electricity provider) asking if she needed to be on their priority services register. She told me about it, so I looked up my electricity and gas network providers (ie the people who put the pipes in the ground to bring the power to you) here
Then phone each of them immediately and within minutes I'm registered as needing priority attention in the case of peer cuts, outages, breakdowns etc. I didn't need to send any proof - or even tell them what my condition is - but it's wise to say 'yes' they can pass on your details to emergency services, British Red Cross etc locally, as it would be those local people who come to help you.
Of course, this doesn't help us pay for y=our heating ... being deemed eligible for winter fuel payments is still ab battle to be had!
I hate to be the bearer of bad news, but I looked at this as I am Carer fr a my oh who has multiple liability issues issues.
There is no protection on priority list in a 'national emergency / planned power cut ' even if you are on the list.It just means that you might get priority in the case of a power failure, and 3rd party help if available.! The government will decide what is prioritised and that would be hospitals etc, not private individuals.
See this pdf: Extra support when your electricity stops for a while: spenergynetworks.co.uk
Also from Scottish power website priority registration page/;
Continuous electricity supply – we will notify your local electricity distribution company if you have essential medical equipment that relies on electricity to make sure you are notified in advance of any interruption to your supply. They’ll also prioritise your reconnection if there’s an unexpected power cut.
Its always a good idea to register anyway.
If anyone else knows different, I would appreciate knowing about it.
That is a bit of a downer indeed - the scheme is 'promoted' (once you've happened upon it) but they don't really tell you what it means. I guess I'm just keen they would get me an emergency generator/ allow me access to somewhere still with power so I could charge my heated gloves and socks to at least keep some good in them!
But let's hope it never gets to that - and I'm still hoping we (through SRUK etc) can lobby the government to pay proper attention to such needs in 'Programme Yarrow'!
But I also still did the application myself also! Same hopes, as I am a carer and we have tele call linked for my husband( which would also be unavailable in a power outage) I also did it through my supplier!
I'm sure it could/would help somehow! Not all power cut are planned, so you could have help in most scenarios!( Never ask, never get!)
That is one of the reasons I also still bought a gas cooker that can at least be used in an outage/emergency! I've had reason to test that out on more than I occasion.
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