UK: REGISTER AS A VULNERABLE PERSON TO GET CORONAVIRUS SUPPORT

boolybooly said:
Though I don't actually want any extra visitors or food, just want to be able to get my supermarket delivery without being squeezed out of the picture by the sudden huge demand for deliveries from everyone who is trying to obey the govt edict to isolate.
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Hell..hath..no..fury... said:
this is exactly my predicament
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Trish said:
And mine. I like the idea of contacting the GP. I'll email mine, I think.
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Simbindi said:
Yes. All I want is access to supermarket online delivery slots myself!
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Yep, same here! I have emailed my GP about this too. Will let you know if I get a response.
 
Hell..hath..no..fury... said:
It'll be great fun trying to explain that to the evil cow bags from hell, aka GP receptionists. But that is very interesting info :thumbup:
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My GP will accept emails and letters by email attachments but insists on sending her responses by hard copy letter (the reasoning is about the 'lack of security' of emailing). I made that arrangements years ago, before the Standard was introduced by NHS England. I still haven't got around to citing this Standard in a letter, but will do at some point. One thing the current Coronavirus epidemic is highlighting is that GPs can switch to electronic means of communication very easily, when there is a will to do so. Also, my practice's reasoning is false, as they could easily subscribe to a secure emailing service - the hospital that did my autism assessment communicated with me this way. They basically don't want to pay for this service.

I suggest you put any needs in writing, citing their duty to meet your communication needs under this standard.
 
Simbindi said:
My GP will accept emails and letters by email attachments but insists on sending her responses by hard copy letter (the reasoning is about the 'lack of security' of emailing). I made that arrangements years ago, before the Standard was introduced by NHS England. I still haven't got around to citing this Standard in a letter, but will do at some point. One thing the current Coronavirus epidemic is highlighting is that GPs can switch to electronic means of communication very easily, when there is a will to do so. Also, my practice's reasoning is false, as they could easily subscribe to a secure emailing service - the hospital that did my autism assessment communicated with me this way. They basically don't want to pay for this service.

I suggest you put any needs in writing, citing their duty to meet your communication needs under this standard.
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i will, i'll add it to my letters to the supermarkets lol.

'lack of security' was the reason my GP refused email comms when i first asked 10 years ago.
 
Hell..hath..no..fury... said:
i will, i'll add it to my letters to the supermarkets lol.

'lack of security' was the reason my GP refused email comms when i first asked 10 years ago.
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If you go to your practice's website, you might find a link to 'Accessible Information Standard' or 'Accessibility'. It'll likely be hidden away where no one who isn't specifically looking for it will see it!

This is what my surgery's website says:

Accessible Information

The Accessible Information Standard is a new 'information standard' for implementation by all organisations that provide NHS care. The Standard aims to ensure that people who have a disability or sensory loss receive information that they can access and understand, for example in large print or via email, and professional communication support if they need it, for example from a British Sign Language Interpreter. This also applies to parents and carers of these people. The Standard requires organisations to:

1. Ask people if they have any information or communication needs, and find out how to meet their needs

2. Record those needs clearly and in a set way

3. Highlight or flag the person's file or notes so it is clear that they have information or communication needs and how to meet those needs

4. Share people's information and communication needs with other providers of NHS and adult social care, when they have consent to do so

5. Take steps to ensure that people receive information which they can access and understand and receive communication support if they need it.

Although not exhaustive, the standard is likely to apply to those people who are blind or d/Deaf, those who have some hearing or visual loss, people who are deafblind and people with learning disabilities. For example they may need their information in a format other than standard printed letters; such as large print, coloured paper, or via email etc. They may also need help with communication through the use of a British Sign Language (BSL) Interpreter, deafblind manual interpreter, or an advocate etc.
Successful implementation of the Standard aims to lead to lead to improved outcomes and experiences, and the provision of safer and more personalised care and services to those individuals who come within the Standard's scope. It should lead to improvements in patient satisfaction and experience, patient safety, outcomes (for example due to earlier diagnosis and treatment) and patients' ability to self-care and adhere to clinical and medical advice

If you have any specific information needs covered by the Accessible Information Standard please let a member of the practice team know so that we can try to meet this.

This does not apply to:
- Patients who prefer to get their information in other formats that so not have a disability or sensory loss
- Foreign language translations
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But of course, it still doesn't list it's email address on the website!
 
boolybooly said:
Yes that is a good idea, I will try phoning them on Monday and find out what is going on.

Though I don't actually want any extra visitors or food, just want to be able to get my supermarket delivery without being squeezed out of the picture by the sudden huge demand for deliveries from everyone who is trying to obey the govt edict to isolate.
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Well that could not have gone worse. My GP could not help me because I was not category 4.

He also said I did not have a recurrent cold virus for 8 years, which may be true as it was probably flu but he was disbelieving and dismissive which is insult enough.
 
Simbindi said:
If you go to your practice's website, you might find a link to 'Accessible Information Standard' or 'Accessibility'. It'll likely be hidden away where no one who isn't specifically looking for it will see it!

This is what my surgery's website says:



But of course, it still doesn't list it's email address on the website!
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There's isnt even a website address on their website. Its just a standard nhs page. The only thing they remotely have referring to accessibilty, is about disabled access etc.

There is an option to change to managing everything online... Which 'may' involve email comms within that? But if thats the case i can't do it, as i can't order my prescriptions online or my meds will be took off me. So i can't have an 'all online' set up. My prescriptions still need to be handed in and collected manually so my GP can still keep me on it.

Speaking of which, its seems we can't hand in paper prescriptions anymore. The surgery is closed and the only way to speak to a doctor is to go through a phone screening first and the only way to 'hand in' a prescription now, is to do it... over the phone :banghead:
 
I hit the same problem with some meds when I tried to change to 3 monthly - a couple of them have a maximum on one script - which I am already on per month, and a 3 month script would only give me one months worth of those drugs. It wasn't just painkillers affected, one of the others was, something fairly benign like a blood pressure med was as well.

Phone contact for everything, sure sounds great, if you can use a phone.:grumpy:


I suspect that disability rights may be going back a decade or 5 for the foreseeable. :banghead::banghead::grumpy:
 
Hell..hath..no..fury... said:
Wow, what, so thats it then?
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Apparently. It was good of him to phone. He explained he has to stick to the NHS guidelines which is understandable and he said he has not been asked to send any NHS letters or to expand the help list on cat 4 patients which was interesting...

... then he expressed disbelief of my account of my own illness, which was not such a good feeling given he is my doctor, if my account is not given credence then there is no basis for consultation. I am still trying to understand what happened. He said HSV2 could stay in the body so accepted that but that a cold virus could not do what I was saying, implying that the dogma meant my account was not credible.

I suggested that this might be what the text books said but that I had to deal with reality but his parting comment was that he would stick to his text books which was a little chilling. So I said that if he could not help me I would have to consult my private doctor who is Dr Myhill.

And that was that!

I did try to discuss the idea that HSV2 might immitate the human body (molecular mimicry which has been studied only a little in HSV2 ) which incidentally may also apply to H1N1 and (EDIT because I confused myself by trying to study this when too tired to think straight sorry) possibly SARS-CoV-2, we dont know but there are reports of persistent post-infection fatigue syndrome with COVID-19 which suggests persistent infection.

We didnt really have enough time to discuss the finer points of this and in any case he made it plain he was not able to consider this kind of idea, so it all just kind of fell apart. Sad.
 
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Wonko said:
I suspect that disability rights may be going back a decade or 5 for the foreseeable. :banghead::banghead::grumpy:
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Aww shucks, and just at a time when we had it so damn great too.

ME disability rights is already a few decades behind, so a further five and we're almost experiencing the delights of the victorian era. Might even get a lovely name change again, neurasthenia does slip off the tongue nicely ;)
 
My very healthy, very fit ex husband aged 72 who is perfectly capable of riding his bike or walking to the supermarket and standing in a queue with everyone else, has just informed me that he has got himself on the Sainsburys priority list on the basis of being over 70.

My daughter looked up the Waitrose website and found they are planning to set aside a quarter of their delivery slots for current customers in the priority group which will include over 70's and they will write to their customers. No idea what other supermarkets are doing.
 
My guess, from reading the odd supermarket website and gov.uk, is that it's primarily only the people who are deemed extremely vulnerable, not just vulnerable, who are getting the main support. As the "extremely vulnerable" ones include the ones with the respiratory conditions, people undergoing cancer treatment, people with blood cancers regardless of whether they are currently having treatment, and so on, that's understandable, but the bar needs to be lowered :(
 
Hell..hath..no..fury... said:
My prescriptions still need to be handed in and collected manually so my GP can still keep me on it.
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Before they changed the rules about a year ago (can't remember exactly when) I wasn't able to order my repeat Tramadol electronically, although I was able to order everything else. So my GP practice agreed I could give them a year's worth of self-addressed envelopes (or addressed to the pharmacy I was using) and they would mail the prescription to me/the pharmacy.

For people who like to fill in the paper form for repeat prescriptions (which is a lot as they are in West Somerset and have a high proportion of elderly patients), with the coronavirus the surgery has moved the box they use for this outside and have asked people to use this, remembering to leave 2 metres between anyone else who may be queuing to do this. They are not allowing anyone into the surgery unless they have gone through their triage system.
 
Maybe they're going to just wait until they've made the vulnerable, extremely vulnerable, then
Simbindi said:
For people who like to fill in the paper form for repeat prescriptions (which is a lot as they are in West Somerset and have a high proportion of elderly patients), with the coronavirus the surgery has moved the box they use for this outside and have asked people to use this, remembering to leave 2 metres between anyone else who may be queuing to do this. They are not allowing anyone into the surgery unless they have gone through their triage system.
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Thats really thoughtful of them, they sound a lot better than mine. I decided to test my 'ring in' prescription option this morning for a non repeat item i sometimes get to see how bad it will be when the time comes to order my usual one in 2 weeks time...

So far its been engaged for 2 hours
 
My correspondence with my MP about trying to get us on the priority list continues:

Dear ..., [MP's assistant]

I appreciate your taking the time to reply to my email, and your sympathy and suggestions. However none of the suggested options is viable in our situation.

As I explained, my daughter and I are disabled by long term sickness. The effect of this is that we both have extremely limited energy and need to pace ourselves very carefully to try to avoid worsening of symptoms and becoming unable to care for even our most basic needs.

This means the suggested options of telephoning our needs to helpers is not viable as a long term option, as speaking on the phone is too exhausting as a means of regular communication, and we don't, for obvious reasons, keep cash in the house to pay for volunteer delivered food. As a one off in an emergency if we run out of one or two items, this could be helpful, but for a regular weekly shop for two people with specific food needs, it's not viable. And it seems likely that for people like us, this lockdown is going to go on for many months if not years.

If our health is not to be damaged further and possibly irreparably, we need the stability and accessibility of being able to order our food online, as we have done for many years since we both became housebound. There are many thousands of others around the country in the same position who are desperate to just to be acknowledged as needing priority access to online supermarket shopping along with the others the government has designated as high priority.

You urge me to sign up to the government priority list. We can't. I tried. Our condition (severe ME) is not listed on the list, and there is no option on the sign up page to explain. What I am asking our MP, [name], to do is to make a serious effort to urge the government to add those citizens who are on higher rate PIP to the list of high priority needs so we can be given priority by online food delivery companies.

My very sick daughter has been staying awake for several nights to try to get us slots on the Tesco delivery list. She did manage to get one after several nights attempts. This was stressful and damaging to her health. So we are OK for food for a few more weeks, but are left anxious for the long term. We can't go on like this. We need urgent government action.

As a first step, can I urge [MP's name] to sign the letter from the ME charities attached:
https://www.actionforme.org.uk/news/action-on-urgent-need-for-priority-shopping/
I hope he will also take the time to make personal representations to the government department responsible to urge the needs of his constituents, like [daughter's name] and myself, in this situation.

Thank you,
[my name]
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Edited to remove MP's name.
 
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