Radio 4 talks about CLL: Hi all, interesting... - CLL Support

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Radio 4 talks about CLL

Tinkataz
Tinkataz

Hi all, interesting segment on The Today Programme on Radio 4 this morning about CLL, and how those not receiving treatment are falling through the cracks of support for Covid 19 ( including myself).

To find it you go to BBC Homepage, click on Sounds, then Schedules, then 4. This will take you to today’s Radio 4 schedule, where the Today Programme starts at 6am and is 3 hours long. The section about CLL is at 2:48:50, so near the end. Hope this is useful. The more publicity about the situation the better!

48 Replies
oldestnewest

Thank you.

I will listen on catch up ! I knew there was a mention of a radio piece, but couldn’t for the life of me remember who mentioned it, so thank you.

Colette

Good find, Tinkataz! 👍 I can't believe I missed it when I was supposed to be 'listening' this morning! 🙉

How disappointing that the program couldn't speak to a spokesperson from the NHS to answer questions on the matter. However, the response the program did receive from the Dept of Health should be sufficient to help all those diagnosed with CLL to finally get on the Extremely Vulnerable list.

From the BBC program, not word for word, but basically: "The Dept of Health told us that they have sought to contact all patients with CLL that they can identify, and we have provided guidance to GPs and Specialists on how they can add additional patients to the list".

This also reaffirms the NHS 'Rules used to identify patients at very high risk of hospitalisation from COVID-19' guidelines Table 2, where a DIAGNOSIS of CLL has a code from Rule 2b in SNOMED_Flu_Subset_v2

digital.nhs.uk/coronavirus/...

Be safe,

Davy.

ygtgo
ygtgo
in reply to NavyDavy

.... all those diagnosed with CLL to finally get on the Extremely Vulnerable list.

... all those, but not in Scotland.

Just waiting for a return call from my health center ... we called 10mins ago, and was met with a .. " but we have already decided not to send you a letter " ... receptionist speak for ... "go away, stop annoying us"

I have been passed from pillar to post and back again ... finally got a reply from the Scottish Government ... " contact your GP "

They are the problem ... they have been issued from the Scottish Government a ChemoCare list ... no chemo ... then your not at risk.

What makes it worse, I cannot physically get to the Health center due to my poor mobility .. and all the local taxies are off the road even if I wanted to risk using them ... and my poor hearing makes using the phone practically useless.

They do NOT take emails ... I gave my son a copy of the UKCLL/L Care/CLLSupport letter and asked him to deliver it ... theres not even a letter box on the building.

Maybe they don't want to commit on paper ... gggrrr

Tinkataz
Tinkataz
in reply to ygtgo

Not in Scotland? I live in Edinburgh, really disappointed. I’m seriously miffed! Got a phone consultation with GP next week, planning on quoting what the Health Minister said, and if she says not in Scotland think I’ll contact the Scottish Health Minister, the First Minister, the press, whatever it takes. Stay safe

ygtgo
ygtgo
in reply to Tinkataz

The Scottish Government 'passed' me back to my GP, we called the health center, the receptionist told me that they would call me back.

When they contacted me (10 mins ago) .. a NURSE said that I do not qualify for a letter .... back to the receptionist, I informed her that the Scottish Governments advice was for me to see my GP ( round and round in circles)

She said they would call me back ...I've to do all this over the phone and I'm practically deaf enough to make type of communication useless.

I don't expect to get anywhere ... when officialdom digs in its heels, yer onto a loser.

Anyhoo ...

1. The NATIONAL Health service has updated me to very high risk - clinically extremely vulnerable

2 The Scottish Gov. regulations state that anyone with a suppressed immune system must be included for a letter ( the reality here for us - no chemo no letter )

3. NHS INFORM - The one nicola advertises every day when she deals with the virus ... states that ANYONE under 70 who receives the annual flu jab is at high risk ( Nurse just told us that they don't use that site )

4. I got an email this morning from the Scottish Gov. saying the reason that I have to go back to my GP, is that he/she can make a clinical judgement.

There are 6 main groups of those who are at high risk ... but ... there is an unwritten 7th.

If my GP thinks that I am high risk he/she can include me as high risk and treat me as if I was in one of the origional 6.

P.S.

Experience tells me that they will refuse ... no chemo - not at risk ... odds on.

Tinkataz
Tinkataz
in reply to ygtgo

What a nightmare! Still got to try though, not like I’ve got anything else to do just now. Thank you for the info, that’ll come in handy. Even if I get nowhere with officialdom, then hopefully I’ll get somewhere with the press 🤞🏼

ygtgo
ygtgo
in reply to Tinkataz

They didn't call back

Tinkataz
Tinkataz
in reply to ygtgo

Been discussing it with my other half. Think my first step is going to be contacting my MP take it from there

Tinkataz
Tinkataz
in reply to ygtgo

Tbh I work in a big supermarket so I absolutely do not want to go back to work before I feel safe. But, can’t do without my wage!

NavyDavy
NavyDavy
in reply to Tinkataz

So in Scotland CLL is less debilitating than in the rest of the UK?

What guidelines are they following? I've tried to find them, without success, but a lot of the information I have found is exactly the same as the NHS in England.

Having looked at the very basic criteria there is one fundamental difference between Scotland and England. (I'm unsure as to the rest of the UK at the moment).

The Chief Medical Officer for England asked the NHS to produce a list of vulnerable people “AT HIGH RISK OF COMPLICATIONS" from COVID-19, who should be shielded for at least 12 weeks.

This list is known as the Shielded Patient List (SPL).

The inclusion criteria for the SPL was produced in Table 2 of the NHS 'Rules used to identify patients at VERY HIGH RISK OF HOSPITALISATION from COVID-19' guidelines.

It does not clearly state in this table that a diagnosis of CLL is sufficient to be included in the SPL, however, when you look further into the inclusion criteria under the SNOMED column it states that for inclusion the patient requires a code from Rule 2b in SNOMED_Flu_Subset_v2.

The code for CLL from Rule 2b in SNOMED is 277473004.

It does not state at what stage of treatment, only that the condition of CLL has a code of 277473004. By default, any patient with CLL has to be included in the SPL.

In addition to the SPL a further list was produced of vulnerable people "AT RISK" (ordinarily those who require the annual flu jab) and this group should practice 'strict social distancing'.

Now, when the English NHS letter was sent out to those on the SPL it states quite clearly:

"The NHS has identified you, or the named person you care for, as someone who may be at risk of severe illness if you catch Coronavirus (also known as COVID-19). This is because you may have an underlying disease or health condition that means if you catch the virus, you are more likely to be ADMITTED TO HOSPITAL than others".

Correctly determining that because of a compromised immune system the virus is going to make someone with CLL more ill than someone with a fully functioning immune system.

So..........this is where the Scottish Chief Medical Officer differs. The instructions from this CMO to Scottish GPs is that the SPL list will comprise of those AT HIGHEST RISK OF SEVERE MORBIDITY OR MORTALITY from COVID-19.

sehd.scot.nhs.uk/publicatio...

This is different to the English CMO's 'ADMITTED TO HOSPITAL'.

I can only presume that Scottish GPs are being presented with the decision of whether someone is basically likely to die if they catch Covid or not.

The Scottish CMO does state that there will be anomalies that GPs are expected to rectify. (This also applies to the English CMO).

The following paragraph from the CMO's instructions is addressed to Scottish GPs:

"We also acknowledge that some of the six groups (conditions to be shielded) are broad in their definitions. TheNHS Inform website will be updated regularly over the next few days with more detailed guidance to identify those within each of the six groups. We value your clinical knowledge and practice based systems intelligence in helping to identify those at particularly high risk within the six groups".

In other words, NHS Scotland are expecting Scottish GPs to do the identifying of who should be on the SPL. So the onus here is clearly on the GP.

Furthermore, patients in England are encouraged to contact their GPs to check whether they are included on the SPL. In Scotland they are discouraged, instead they are expected to wait for a 'NHS' letter before contacting the GP. A letter that may never arrive.

Okay. Don't want to bore people to tears, but again, the key here is the GP, once you are able get past the receptionist, practice nurse, surgery cleaner, etc.

Again, I'm just a laymen, so appreciate any views or comments.

Not sure if this will cast any light on your predicament, Ygtgo and Tinkataz. Just wish you both the best of luck and to be thankful that there are many advantages of living north of the border.

Be safe,

Davy.

Tinkataz
Tinkataz
in reply to NavyDavy

Excellent stuff thank you so much. That has saved me so much work. My GP has been great, but as with Ygtgo, not all are, which means it’s a lottery, so I really don’t feel I can leave it alone, even if I’m successful, although I may not be! This is a seemingly insignificant oversight that can have potentially devastating consequences, the least of which are huge stress. And as gets mentioned on here a lot, stress can effect our health.

NavyDavy
NavyDavy
in reply to Tinkataz

Yes, Tinkataz, it's that 'lottery' word again!

So right about stress. It's not as if CLL , finances and shielding for heaven knows how long wasn't worry enough.😱

I do hope your efforts make someone look long and hard at the current policy in order to safeguard all those who have 'fallen through the cracks'. 🤞

ygtgo
ygtgo
in reply to NavyDavy

My local health center are 'hostile'

The do not take emails. so I have physically attend or phone.

My mobility is extremely poor, and I have no transport ... I am too deaf to use the phone.

Here is yesterdays experience ... My wife calls the Health Center ... the receptionist the call ... immediately saying, you have already been refused a letter.

We manage to 'move on' to the decision maker ... a nurse. She decides who gets a letter ... Gp's are to be kept out of the loop leaving them to deal with non covid matters.

The nurse instantly says that I do not qualify for a letter .. she's already been onto the Glasgow Hospital ... ( who say that they are only using the Chemocare list) .. meaning that they pass me back to the Scottish Government.

The Scottish Government pass me back (through my MSP to my GP ) ..who I cannot reach because covid concerns are not to be handled by a GP ...

Now .. to top it all ...

This comes from the Scottish Governments ... Shielding Correspondence office ....

Shielding.Correspondence @gov.scot

First, I must note that it would absolutely not be for me to comment directly on anybody’s medical position, I am not a clinician.

That said, the four Chief Medical Officers have identified six groups of people who are at extremely high risk from Covid-19. Those six groups are:

• solid organ transplant recipients;

• people with specific cancers;

• people with severe respiratory conditions;

• people with rare diseases and inborn errors of metabolism that significantly increase the risk of infections;

• people on immunosuppression therapies sufficient to significantly increase risk of infection; and

• people who are pregnant with significant heart disease.

It is people in these six groups who have been written to and asked to ‘shield’

Now comes a chink of light ...

There is, however, a seventh group. This is where a clinician, using their clinical judgement, considers that an individual is at extremely high risk from COVID-19 even though that individual does not fall into the 6 existing groups. Where a clinician makes such a judgement, that patient is included in the ‘shielded’ group and receives the letter and access to services in the same way as the other six groups.

It is not for anyone other than a patient’s clinician to make this judgement and so our advice would be for anyone to speak to their GP or specialist clinician and raise this issue.

GP’s and specialist clinicians have been advised of the actions they need to take if in their medical opinion a patient should be shielding as noted above.

We try and contact ... and we're back to the nurse who SHIELDS my GP.

She obviously does NOT know about the 'chink of light' and I cannot even talk to her without the shutters going up and I cannot send them any links ... because ...

I'm back at square one ... I cannot use a phone and I cannot physically get there .. even if I did manage to attend ... I'd be automatically passed on to the nurse who is hostile

I am not under the protection of the NHS ... I'm trapped by bureaucracy, a bureaucracy that doesn't know all the regulations.

There are far more snakes than ladders in this game.

ygtgo
ygtgo
in reply to ygtgo

A bit of sad news, last night a friend told me that he was hospitalised with the virus ... he's late 50's no health issues

fever - my eyesight problem started 5 weeks ago, but have deteriorated

Charles Bonnet Syndrome?

hallucinations because of my loss of vision

and I'm not at risk ...

bennevisplace
bennevisplace
in reply to ygtgo

Ygtgo, this may be a daft question but where is your haematologist in all this?

ygtgo
ygtgo
in reply to bennevisplace

it goes like this ...

Health Center/nurse /Hospital/GGHB/Scottish Gov who pass me back to Health Center/nurse ... ad nausium.

I contacted the hospital and they pass me staight on to the Greater Glasgow Health Board, who pass me onto the Scottish Gov.

So

1. We have taken advice from the hospital

2 We have taken advice from GGHB

3We have taken advice fron Scottish Gov

4 Its for your GP to decide

(GPs are kept out of the loop to let them deal only with non covid patients)

and round we go again on the ChemoCare list express.

( And this lot want independance ? )

As I'm housebound with loss of hearing I'm abandoned ... communication with my health center is by phone or appearance only.

My MSP has been ... ( )

So now I'm trying my westminster MP. I've asked him to try and break the circle, starting with my local health center by asking these questions.

1. Do they know about the updated information given to UNTREATED CLL patients ?

( the hospital have already said to ignore this as it is only from 'charites' )

2. Do they know about the NHS updated information given to untreated CLL patients.

(the nurse said that she only obeys the Scottish Gov. chemolist)

3. Do they know about the Scottish Governments Regulations on underlying conditions?

( This does not count because I'm not on the chemolist)

4. Do they know about the Scottish Governments NHS INFORM defination on evryone who is under 70 and receives the seasonal flu jab is also at high risk from covid-19 ?

(nurse -this does not count because they do not use the Scottish Gov NHS INFOM advice - even though wee nicola has it plastered across her lecturn at every days covid updates)

5. Are any GPs involved in assessing hig risk letters ?

6. and most importantly .. Do they know that people who do not meet the criteria of the six groups can still be issued with a shielding letter - a clinician CAN deem you at risk and you must be given the same protection as the other six groups. ?

The worst thing at the momment is the eye strain in my campaign to get SOMEONE to listen .. light exposure = eyepain for me.

I feel like Blackadder ... am I the only one who can see that the world around me is mad ?

Nurse - Baldrick

Hosptal - Baldrick

GGHB - Baldrick

Scot. Gov - ( What's the collective noun for a group of Baldricks ? )

And who is at the head of this Coronavirus ---- do you remember mad prince George from series 2 ?

Tinkataz
Tinkataz
in reply to ygtgo

What an absolute nightmare, and not good for your stress levels. A group of Baldricks!! I could think of a few names, non that I could write here though. Sounds like you have done absolutely everything possible, I’m hoping I’ll have some luck with my MSP . I going to come at it from the angle that the U.K. Govt is dealing with the situation far better than the Scottish Govt. If I too get nowhere, my plan is the same as yours, UK MP, who happens to be the only Labour Scottish MP in a sea of SNP MP’s, so I assume he will relish the opportunity to criticise the Scottish Govt. I really admire everything you’ve done so far, maybe the more of us that kick up a fuss, MAYBE someone will listen. I really do not want to be forced to go back to work on the shop floor at the supermarket when it’s not safe! Thank you for explaining everything 👍

ygtgo
ygtgo
in reply to Tinkataz

Stress = Tinnitus = STRESS

An pal of many moons ago contacted me last night on facebook, he knew that I had eye trouble ... he typed ... Have you heard of Charles Bonnet Syndrome?

He got the infection 5 weeks ago .. at the height of the fever, he went blind in one eye and lost vision in the other ... I think that he was just holding out a hand ... " he was told that it was uncurable ... I’ve got hallucinations because of my loss of vision.

He's in his 50s - no underlying health problems ... and my political and medical masters are telling me that I am not at risk from Covid-19

Tinkataz
Tinkataz
in reply to ygtgo

I’m so sorry to hear that, it’s terrifying. And on top of everything the people who are given the job of supporting you are completely letting you down. I’m lucky with my surgery, they’re attitude is, that their job is to support, look after and help me. Your surgery seems to have the attitude that, anyone asking for help is “at it” and wasting their precious time. They need to have a career re-think! But your Blackadder analogies made me laugh, so thank you.

bennevisplace
bennevisplace
in reply to ygtgo

Ah, so it's all a cunning plan?

I think we need to do some revision here

inews.co.uk/culture/televis...

🤣🤣🤣

NavyDavy
NavyDavy
in reply to ygtgo

I do sympathise ygtgo. More frustrating for you than most because of your lack of transport and and other inabilities.

Just can't understand why your GP is making himself so difficult to contact. We had a problem emailing our surgery, but we got through on a non-urgent feedback/'how are we doing' type email address hidden on the surgery website. My brother had no email for his GP, but found they had a Facebook page and he put some choice comments on there. NHS letter arrived following day.

As bennevisplace asks, why hasn't your haematologist had some input? It's widely accepted that some GPs have limited knowledge of CLL.

When the Guidance from the Scottish CMO (SCMO) is examined it contains several comments regarding the need for GPs and practices to share information with NHS Scotland in order that decisions can be made on patients' vulnerability.

For example:

"In the situation that we are facing with Covid-19 pandemic, there is a strong practical and moral

argument that we should be proactively sharing as much information as possible from patients in “at risk” groups across the wider system to help clinicians who do not necessarily know these patients to make decisions about their care, should they present".

and.....

"We would also like to ask for

your help with the identification and proactive management of patients who are at particularly high risk of severe morbidity and mortality from COVID-19".

Again, seeking assistance from GPs.

So Covid concerns are the responsibility of GPs.

The SCMO also seems to acknowledge that there is plenty of scope for high risk patients to 'fall through the cracks.'

You mention the Chemocare list, ygtgo. Well that is a good example. Someone undergoing non-chemo treatment for CLL will not be on this database. That patient will have to be found using either the Hospital Episode Statistics or the GPFLU, if that is the Rule Logic that NHS Scotland follows.

The SCMO is also giving a great deal of discretion to the GP and this is where your 'Rule 7' applies.

The SCMO states that those 'at high risk' will be selected from those who receive the annual flu jab AND have clinical conditions which are likely to put

patients at the highest risk of severe morbidity or mortality from COVID-19.

The SCMO also states "We have identified this group, based on expert consensus. The group INCLUDES: ..(then lists the 6 conditions)

The crucial word here is includes.

It indicates that the group of 6 conditions is not exclusive and is in addition to any other conditions the SCMO, NHS or GP considers likely to put

people at the highest risk of severe morbidity or mortality from COVID-19. Great opportunity for discretion.

As you rightly say, ygtgo, there is scope here for any GP to include any patient on the list if they consider them to be 'at high risk'.

Finding someone to be your representative or finding a way of getting to that surgery yourself and speaking with your GP seems to be the only answer at the moment.

Davy.

ygtgo
ygtgo
in reply to NavyDavy

Hi Davy

Yesterday, I came across something that might explain what is happening.

I suspect that NHS Scotland are sidelining GPs - Hospital 'specialists' - Local and national government departments.

There is a 'database' computer system that triages Coronavirus from non Coronavirus as soon as it 'hits' ANY department.

ie. My local Health Center ... we call, and state that we are wanting to receive a high risk letter and the receptionist tells us that we have ask for this before and were refused. She puts us through to the nurse, who has been designated to triage any covid calls. She tells us we do not qualify ... there was no consultation.

They know I have been refused - they know I do not qualify ... this is not a person to person call ... its all far too fast and impersonal.

I now now that there is a ChemoCare list that is what is driving the system, but the instant answers from both health center and hospital are revealing.

I found this ... Online Consult from EMIS Health

A new online system that enables Scottish GPs to triage patients before they arrive at the practice is helping them manage potential coronavirus cases, while ensuring face-to-face appointments are managed safely and speedily.

It enables us to direct patients to the most appropriate member of the team, advise, prescribe or answer queries without necessarily seeing the patient.

There was another passage ( somewhere ) that stated that by using a triage system, they can keep GPs out of the loop, and leave them free to work with non covid cases as usual.

I found all this through the Greater Glasgow boards site ... There was a link to a consultant & GP who seemed to be connected - I e-mailed him and reminded him that he had advised that this system was open to change ... I sent both CLL and NHS updated links and told him that untreated cll patients are now classed as very high risk clinically extremely vulnerable, and now that there is talk of easing the lockdown he MUST make the appropiate changes to the system being used in Scotland.

NHS INFORM ( Scotland) .. type cll - and there you have .. Complications of chronic lymphocytic leukaemia

People with CLL usually have a weakened immune system and are more vulnerable to infections because they have a lack of healthy, infection-fighting white blood cells.

Treatment with chemotherapy can also FURTHER weaken the immune system.

And sitting right next to this is a link that takes you to ... CLL Support

Ye Cannae make it up.

Don't get ill near Glasgow ... they have a Uniform and Laundering Policy

PPE ... that is not visibly contaminated with blood, or other bodily fluids, (including COVID/19 contamination)

How the hell can you visibly see COVID/19 contamination ?

NavyDavy
NavyDavy
in reply to ygtgo

Hi ytgto,

Good point. I felt that the triage system was being used by some English GPs surgeries. My wife and I, also my brother with rheumatoid arthritis, fell at the first hurdle. The receptionist. We eventually found a way to bypass her and as soon as we contacted the GP, our NHS letter arrived. My brother had to use more subtle means and posted on his GP surgery's Facebook page. Result, phone call from his GP and the NHS letter in the next post.

To think that NHS Scotland are sidelining the very people the Scottish CMO is requesting assistance from to identify 'at high risk' patients is incredible.

From the sounds of it NHS Scotland are using technology and databases to select 'at high risk' patients. A process that both Scottish and English CMOs have identified as 'having limitations'.

Quote from Scottish CMO's shielding guidance to GPs:

" However, there are limitations to the national data sets for identifying all patients.

We acknowledge this central search approach may not identify all patients in this

very high risk group, and we will also be asking hospitals to help us identify any of

the above groups of patients who may not be found on central registers and ensure

there is two way communication between practices and specialist teams to ensure

communication and work is shared and not duplicated.

If you have capacity, we ask you to forward a generic copy of the CMO’s advice

letter to any additional patients YOU identify who have not been centrally identified.

We appreciate that all services are under significant pressure at this time and it may

not be possible to do this".

YOU as in GP!

Not sure where you can go from here, ygtgo, short of getting the GP to visit you under a non-Covid pretext and then confronting them!

A great shame you have no one locally to fight your corner. Very best of luck with the MP too.

Davy.

ygtgo
ygtgo
in reply to NavyDavy

It is a computer Code system

Health Services Public Health

Patients seeking inclusion on the shielding register

Check the patient’s record to see if the shielding code has been added: if the code is there they may simply not yet have received the letter as yet. If necessary the practice can simply issue the letter to the patient.

If the patient is not coded, but clearly meets the criteria as set out in the CMOs letter, they can be added to the shielding list as above, returning the CHI centrally and issuing a letter. They may yet receive a letter directly from a central source and it may be worth advising of this to avoid further confusion.

If they do not meet the categories, GPs should use their clinical judgement to identify if they believe the patient meets the severity of risk to justify the potential harms of shielding as mentioned previously

Thanks again Davy

NavyDavy
NavyDavy
in reply to ygtgo

Yes! Nice one, ygtgo. To add further to that useful information, this is an interesting article on the British Medical Association website. So that has to include Scotland, of course? Just to confirm that.......

The general practitioners committee Scotland represents all GPs working in Scotland and is a part of the BMA.

bma.org.uk/what-we-do/commi...

Okay. So this is what can be found on the following BMA website:

bma.org.uk/news-and-opinion...

Identifying patients at highest risk from COVID-19: advice for GPs by Dr Farah Jameel

Guidance from the BMA GPs committee England on the list of at-risk patients and shielding arrangements.

"A number of patients have been able to self-identify as clinically extremely vulnerable via the Cabinet Office website. The names of those who registered prior to 29 March but have not been identified through the central process will be communicated to each GP practice shortly. The list will be sent within your GP IT system on or around 24 April.

Once you receive the list, please review these individuals, determine their appropriate COVID-19 risk category and flag them as high, medium or low risk as appropriate. For any patients flagged as high risk, you will need to send them a copy of the patient letter giving advice on shielding".

Again.....GP, GP, GP!

Well, ygtgo, reckon case proven now 👍

Ghounds
Ghounds
in reply to ygtgo

Not just in Scotland. Still no letter or text for me despite registering!

NavyDavy
NavyDavy
in reply to Ghounds

Have you been able to contact your GP, Ghounds? They are the one to 'flag' your records and initiate the NHS letter. In England, anyway.

Ghounds
Ghounds
in reply to NavyDavy

Phoned the surgery weeks ago, they said not their job. Specialist nurse said the same. I'm very disappointed with my gp who knows I'm on my own with other health problems. Ironically she used to ring me every month before my cancer diagnosis!

I also registered on the website but have heard nothing.

NavyDavy
NavyDavy
in reply to Ghounds

Not sure if you've followed this thread, but it is the GPs job.

It's really important to get through to the GP and ask them to state, in writing, that you are no less likely to be hospitalised by Covid than someone without a diagnosis of CLL. She won't do it.

If you can get that request to the GP by email, text or letter. She will have to respond as to whether you are high, medium or low risk. You can then 'fight your corner' regarding shielding once she's replied.

Regarding the GOV.UK website, what they do is check with databases, the NHS and your GPs records. If your GP hasn't 'flagged' you as 'at high risk' then you won't get any further with them.

Have another go, Ghounds, as frustrating as it may be.

Davy.

Ghounds
Ghounds
in reply to NavyDavy

I've come to the conclusion I'm too expensive and they hope I will die quietly. I have autism, also ptsd caused by a lifetime of violence and abuse so I don't have the ability to stand up for myself. I just don't have the confidence. I'm just doing my bit of shopping as infrequently as possible taking every precaution. Thanks for taking the time to reply, it's much appreciated.

NavyDavy
NavyDavy
in reply to Ghounds

I'm sorry to hear that, Ghounds. I was rather hoping that there was someone, friend or family, who could put your case forward for you. Similar to ygtgo, in some respects.

Far from 'they' hoping you'll fade away and save the taxpayer, it's probably a case of too busy, or distracted, to listen or attend to a 'small' voice on the end of a phone. Hence your need to put something in writing. I'm certain that once your GP or your haematologist are aware of your concerns you will get a response. You say your GP was attentive before diagnosis so persevere.

In the meantime, I'm sure you are taking extra care when shopping, but never be complacent regard the risks.

Take care and keep safe.

Davy.

Ghounds
Ghounds
in reply to NavyDavy

Thank you for your kindness Davy. I'm in quite a dark place just now, feeling totally worthless and even wishing I hadn't found out about the CLL. I had enough wrong with me before and the constant background fear and worry is hard to deal with at times. Mostly I ignore it but Covid has made me feel vulnerable. Sorry for moaning. Very best wishes.

Newdawn
NewdawnAdministrator
in reply to Ghounds

Hi Ghounds,

Sorry to hear you’re feeling so low. Maybe the National Autistic Society (NAS) may be able to advise/support you. They’ve been very vocal over how Covid affects people with people on the spectrum.

autism.org.uk/services/help...

Please ring them and see if they can advise you.

Best wishes,

Newdawn

Ghounds
Ghounds
in reply to Newdawn

Thank you Newdawn.

NavyDavy
NavyDavy
in reply to Ghounds

Some good advice from Newdawn.

Don't apologise for moaning on this Group, Ghound 😉 That's what support is all about and I know I'm not alone in voicing that. You only have to read on this group to find most of us have those 'dark places' and 'dread moments'. Keep your spirits up.👍

Davy.

Ghounds
Ghounds
in reply to NavyDavy

Thank you. I can honestly say I've never felt such love and acceptance as I've been fortunate to find here. Restores my battered faith in humanity - some of it anyway!

For NHS decision makers applying the relevant rule 2b to leukaemia patients, the phrase "at any stage of treatment" is the problem. Strictly applied it excludes those on watch and wait as well as those whose treatment is finished! It's difficult to see how this could possibly have been the rule's intention.

Let's hope the DOH gets the message to the decision makers.

Exactly, that’s the phrase I keep coming back to! Does it mean those of us who are not actually receiving treatment yet? It’s so vague. As the expert in the Radio 4 section said, with most cancers, the sooner treatment starts the better, but because this is with us forever, holding off on treatment is the preferred option. But, are we being punished for this? I’m trying to not get too angry. I know having a bit of fire in your belly is good, but I think anger and stress are close bed fellows.

Yes, I totally agree with that "any stage of treatment", bennevisplace. It's contradictory to the SNOMED inclusion criteria which states that a patient is included if they have a code in Rule 2b. CLL has that code. It doesn't state CLL at any particular stage of treatment or in remission, etc.

How can anyone decide that someone who is 5 days away from treatment is less vulnerable to the virus than someone actually receiving treatment?

What if they were 5 weeks away from treatment or 5 years away? Who can calculate that risk?

Will they take CBCs from everyone Watch and Waiting? If they did, who will decide that patient A is less vulnerable than patient B? Who is to say that someone 5 years away from treatment will be affected less by the virus than someone who is 5 months or 5 weeks away from treatment?

It's unrealistic and for this reason anyone with CLL must be presumed to be vulnerable to the virus. Certainly at more risk of being hospitalised than someone without a compromised immune system. The crucial phrase that the NHS in England use in their NHS letters.

'Strictly applied' is a very important point you make. It seems some GPs are doing just that, despite the guidelines to GPs from the Scottish CMO:

"In the situation that we are facing with Covid-19 pandemic, there is a strong practical and moral argument that we should be proactively sharing as much information as possible from patients in “at risk” groups across the wider system to help clinicians who do not necessarily know these patients to make decisions about their care, should they present".

Let's hope the DoH do get the message.

Thanks for the alert, I listened to the programme on catch-up.

So the ball is in the Department of Health's court. Problem sorted!

Thank you. I listened to this today.

Peggy 😀

Yes, I was surprised by the piece, as I am CLL level 0/watch and wait, and I was automatically identified as extremely vulnerable, and received the letter confirming this. It appears as though the people they spoke to have fallen between the cracks, and need to get their GPs to add them to the list.

It certainly has been helpful to have the priority delivery slots from Tesco and Waitrose.

What is the name of the broadcast and what date was it produced ?

Tinkataz
Tinkataz
in reply to dlheinz57

All info on how to find it is in very first post. So it was Radio 4 The Today Programme, 07/05/20. It’s a brief section on in the last 10 mins

Shedman
Shedman
in reply to Tinkataz

Easy access here:

cllsupport.org.uk/cll-shiel...

Dr Schuh in Oxford is the expert.

The pity about this item - much as it does allow that GPs can add patients to the vulnerable list re COVID19.. is that Dr Schuh does not quite grab the simplest line:

Namely, that: CLL patients have lifelong immune dysfunction regardless of their treatment status..

This:


[lengthy expert presentation on our immune dysfunction.. ]

It should not be down to GPs to code patients correctly here: they need to be advised that this patient group are covid19 vulnerable.. code accordingly.

bbc.co.uk/sounds/play/m000hvs8 Episode aired 7.5.20

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