UK's N.I.C.E On THE Sharp End Of A Public Roasting

my N.I.C.E Reply following my FOI request into perscribing criteria of Alzheimer’s Dementia Patients Suffering From Asbestos Mesothelioma.

Given my FOI request research into this mater I am not surprised there is no information available.

But if information was in public domain I would not be making this thought provoking request.

In your reply you say NICE have no guidelines or perscribing criteria into those suffering from Alzheimer’s Dementia Asbestos Mesothelioma.

So I don’t really understand how it can be excluded UNLES you mean from society.

Inept one thinks.

600.000 people in uk are diagnosed with Alzheimer’s Dementia quite a chunk of sociarty 34.000 excluding Alzheimer’s Dementia die from asbestos related cancer.

According to a 2018 Peer Review National And Lung Cancer Audit : Lung Cancer Asbestos Mesothelioma.

The symptoms of lung cancer and mesothelioma are relatively non-specific, as a result of which referral routes are many and varied.

Of those diagnosed with lung cancer or mesothelioma, no more than half are referred directly from primary care to the lung cancer specialist team with suspicion of the disease.

Rapid referral guidelines are available and specialist rapid access clinics have been set up in virtually all trusts in England and Wales to diagnose and treat patients.

Management of patients with lung cancer and mesothelioma is now almost entirely carried out by specialist multi-disciplinary teams (MDTs) with lung cancer and mesothelioma being managed by the same specialist clinical groups.

Establishing a tissue diagnosis for both lung cancer and mesothelioma can be difficult and often requires invasive investigation. Thus there will always be a proportion of patients in whom the diagnosis is established on clinical and/or radiological grounds only.

Furthermore, there are a small proportion of patients who are either not recognised or who are too sick and are therefore never referred to secondary care. Because of the specialist nature of surgery and chemo-radiotherapy, a high proportion of these patients are managed by more than one trust.

This poses problems with completeness of data unless all clinical teams involved in the care pathway are collecting the appropriate data.

I would say those with Dementia Alzheimer’s suffering from asbestos lung cancers are tottaly missing forgot about as peer review surgests.

Clearly as NICE is in business of National Health Care Excellence (NICE)

Excluding those proportion of patients who are not recognised I would of thought would of been on top of any list.

As from my understanding those Alzheimer’s Dementia patients excluded and not recognised like peer review suggest’s would not form any part of health care excellence and could constitute a fundamental breach of there human rights.

whatdotheyknow.com/request/...

UN Human Rights EUR

@OHCHR_Europe

[katieoxo60]

Hi Jeff, very interesting. It would seem that the decision in simple terms is up to the MDT team or own doctor. Them being covered by the opt out of the patient is too ill to be treated. Leaving us with an untrue number of those with Dementia who die of untreated cancer. As you state none treatment contravenes the human rights act, but how do we establish a Dementia or mentally ill patient has had there human rights contravened , as some patients are seen as unable to give consent due to illness and the doctors are excused on the grounds they feel the patients too ill or the patient is incapable of making treatment decisions. I think in severe doubt carers should be able to consult with medical team about this. Hope you find a solution to your dillema Its a bit like a wheel it goes round & round but never comes to an end. You could of course contact a solicitor in respect of your own personal case. Good Luck

[Hidden in reply to katieoxo60]

Hi Katie am no expert so I consult my human rights book but when someone is NOT recognised like peers surggest is going on that disacrimanatory and fundamental breach of there human rights.

It’s everyone right to accepted for who WHAT they ate

[Cateran]

From my knowledge and from the Information response given in your post Jeff, Quality Guidelines are technically an issue of clinical demand and supply and not necessarily a blanket provision of every specialism in medicine. It could be that your request for information would yield better results within a broader search of cancer Standards. You possibly would already know that and may well have expanded your search within the NICE criteria. If so then I mean no disrespect and apologies if you possess that information.

Incidentally, in Scotland the Scottish Intercollegiate Guidelines Network (SIGN) is more effective in some respects than NICE for quality standards referencing.

Terry

[Hidden in reply to Cateran]

Hi Cateran the inequity in England Scotland makes you wish lived in Scotland.

As for nice IF they have no guidelines guess that’s why those with Alzheimer’s Dementia who suffer from asbestos related diseases are NOT recognised and even excluded.

Is quite simple the should and there human rights should be respected

[katieoxo60]

Hi again, it is quite interesting that the NHs has different criteria in Scotland and Wales yet it is a National health service, should not treatment be the same all over the British Isles according to guidelines issued as a national accepted minimum treatment who ever the patient.?????????

[Carnival567]

The statement I found interesting is the fact that such patients may be dealt with by more than one trust and that data may be incomplete. You would never think we live in a digital world!

[Inamoment in reply to Carnival567]

That is what the labour it project was going to address. I was impressed last week when my gp looked up my stuff at my local hospital both with the sheer quantity and how well it was presented. But I don't know how my huge wodge of paper notes fits in or the digital and paper records at the other two hospitals. To make things worse my local consultant has left so I shall be going to Brighton or the brompton. I don't know what happens to my data or how local hospital blood tests etc end up in the right place. I wish the labour project had been carried through