Frequently asked questions during the... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation
4,056 members2,375 posts

Frequently asked questions during the Covid-19 pandemic

RoyCastleHelpline
RoyCastleHelplineAdministrator

Q. I have not received my letter from the Government which means I cannot request support from the government, can you advise please.

A. As the letters were generated from NHS central records, information posted on 11/4/2020 from GOV UK have asked that GP’s and hospital doctors urgently identify and contact those at high risk, in effect this may cause a delay in letters being sent.

If you still do not receive a letter you should contact your Doctor or specialist.

This link will take you to the GOV UK frequently asked questions as answered above:

england.nhs.uk/coronavirus/...

Continue to practice shielding methods as advised: gov.uk/government/publicati...

Q. What if I need support now?

A. If you are unable to ask relatives, friends or neighbours, you can contact your local council

who can arrange for someone to help with your shopping or medicines. You can find details of your local council from this link: gov.uk/find-local-council

Q. I live in Scotland is there a helpline number I can call to find support?

A. A new helpline number has been provided as of today 14/4/2020 for those most vulnerable or have no support at home, 0800 111 4000 currently it is 0900-1700 but these hours may increase eventually. The helpline number will connect them to local services for support in shopping, medicines and emotional support.

9 Replies
oldestnewest

I'm involved in primary care and can confirm that work is still going on to ensure all who need to be contacted are 'captured' in the 'system' as soon as possible. The confusion arose due to the initial list of 'vulnerable' people being quite different from more recent guidance who need shielding as 'extremely vulnerable'. The former are the people for whom the letters are being sent. They were identified from a 'national algorithm based on the data in the latest clinically evidenced list in this link gov.uk/government/publicati...

These were added to records from national secondary care providers, then GP practices are adding 'flags' for individuals known to be vulnerable and reviewing individuals who have contacted their GPs and self identified as vulnerable to check the validity.

Initially it was believed there would be 1.5 million or so but it has taken longer as many IT systems do not traditionally talk to one another so a lot of manual work is having to be done to explore the various codes allocated to conditions, treatments and prescribed medications to capture them all. This work has continued over the Easter weekend as it's important the lists are as accurate as they can be. If you think you should be on there, contact your GP practice or through this system gov.uk/coronavirus-extremel...

Most areas also have a council of voluntary organisations - sometimes known as a voluntary service organisation that works with many other groups and can signpost to support that may be available.

sorry - on reading that now, it looks even more confusing! I omitted the word 'not' - oops! It is the 'extremely vulnerable' classification who will be receiving letters....(those on very specific cancer treatments, certain cancers, transplant patients, etc) NOT the general list of those who still need to be careful (over 70s, respiratory conditions, immune conditions, diabetes etc)

There should still be government support for people who need it - irrespective of whether they receive a letter - what type of support did you mean?

Hi, I’m on the extremely vulnerable list as I am on a targeted therapy. I did not receive a letter automatically although I’m clearly one of the categories listed.

As I’ve always believed you need to be your own advocate. I rang my GP who agreed that I should be included and added me there and then. I received an email confirmation and a letter in the post several days later.

There is a facility on the government website to include yourself on their support list and only takes a minute to fill in.

Always best not to hang around waiting for something to happen for you if you can do it yourself.

All the best everyone and I hope that soon we’ll see some light at the end of the self isolation tunnel!

RoyCastleHelpline
RoyCastleHelplineAdministrator
in reply to BellaBe

Hi BellaBe,

Thanks for the update. I wondered if you may be interested in the Roy Castle Lung Cancer Foundation Keep in Touch(KIT) Support Service which is a new service designed to support people affected by lung cancer and their carers across the UK. The support available to people with lung cancer has been deeply affected by the period of shielding recommended by the government in response to COVID-19. Priority will be given to those who are socially isolated and would like some extra contact. Please click on the link below where you can get in touch with the support team, should you wish.

roycastle.org/covid-19/info...

Kind regards,

All the Roy Castle helpline support team.

Just an update based on our update yesterday from our primary care c-19 crisis coordination hub that GPs/practices are still working on these letters with the hospitals as the IT systems (often completely different systems) are taking longer to reconcile the records than planned. The work should have been completed by Easter Monday close but I believe the new target for GPs is today at 4pm to complete their submissions, adding 'flags' onto patients they believe to be vulnerable and those where patients have self identified. it is clear that where people are dealt with for a whole range of conditions by hospital consultants, the GPs are often unfamiliar with the medications and implications of these on the immune system so consultants are writing algorithms to help GPs for example in rheumatology disciplines and I imagine similar work is underway with other long term conditions. Sometimes the announcements made on the media take a while to translate into the real world of healthcare across the country.

Latest advice to practices is to complete the information by 24th April for collation by areas on 28th April so if you still feel you should have had one, please contact your GP or hospital consultant if you're still being seen by them so your details are added to the data.

I'm conscious from a patient involved call yesterday that the main link to gov.uk advice is for NHSEngland only and if you are from Scotland, N. Ireland or Wales that you need to click on the appropriate link on the gov.uk covid 19 page for the appropriate detail for your devolved nation.

RoyCastleHelpline
RoyCastleHelplineAdministrator

Dear JanetteR57

Yes you are right, on going to register for support and services, there is a separate link for Scotland , Wales and Northern Ireland. Has anyone else found this is confusing or difficult to navigate around?

Information can be sourced from the NHS websites for each country, how has everyone else found this?

The Roy Castle Support Team

RoyCastleHelpline
RoyCastleHelplineAdministrator

Apologies everyone, I answered this thinking it was the live chat for anyone to respond and interact with. If anyone is looking for information for each country, you can click the link from GOV UK but also NHS websites for each country have detailed information on where to find support and services:

Wales: phw.nhs.wales/topics/latest...

Scotland: nhsinform.scot/illnesses-an...

N. Ireland : nhs.uk/conditions/coronavir...

Kind regards

The Roy Castle Support Team

You may also like...