2018 Peer Review National Lung Cancer Audit : Lung Cancer Asbestos Mesothelioma Dementia Alzheimer’s.

Getting a SNIFF of something quite not right.

Haveing looked into my dad’s so called lung cancer nodule I surspect is mesothelioma BUT as he as Alzheimer’s Dementia oncologist are trying to pull fast one with NONE clinical diagnosis of asbestos mesothelioma.

Thought I would share pathway my dad is at CLEARLY as my dad’s son and carer palative treatments can be as hard for family members to watch profess WITH out injustice of patients LIKE my dad who are either not recognised or who are too sick and are therefore never referred to secondary care.

Makes me feel my dad’s life is worthless ANOYING like a toothach.

Guess that’s why am doing post SO lung cancer mesothelioma national audit will see my post AS it’s far from perfect the injustices lack of recognition.

Here is current pathway AND as anything changed.

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 the not as those with dementia suffering from asbestos lung cancers are tottaly missing forgot about.

Sickering disgrace given contributions made to our not so civiliaed society not over 1 or 2 years but a life time.

[JanetteR57]

Understand your frustration about your dad. This sounds really distressing for you - have you contacted Mesothelioma UK and Alzheimer's UK ? As you say, it's important that patients receive appropriate treatment and accurate diagnosis and also for you as carer to have support too.

The national lung cancer/mesothelioma audit is simply stating what the situation is in the UK and the difficulty in diagnosing either especially where patients have several conditions especially where somebody may have other conditions such as COPD/heart conditions or similar where breathlessness and other symptoms may make detection slow or delayed. The UK National Lung Audit is widely respected internationally as it brings together information from many different sources (hospital episode statistics, outpatient/inpatient data, imaging, diagnostics, pathology, treatment, whether seen by a nurse etc) together so it gives as wide a view/evidence as possible from a data perspective. Of course, it does not capture what patients are or aren't told, how their care may or not be coordinated and how relatives may perceive such care/treatments.

My friend's mum died of pneumonia but clinicians knew she had underlying lung cancer but at only around 7st in weight, and elderly, they told my friend that her mum did not have the strength to fight the pneumonia never mind be given any lung cancer treatment. Her death certificate stated primary cause of death was pneumonia. This is the type of situation that the report refers to as 'a small proportion', it isn't any particular type of condition more the general health of the patient to withstand the harsh treatments. That is a clinical decision and one usually taken in discussion with the patient and or/family. hope this helps.

[Hidden in reply to JanetteR57]

Hi thanks for reply .. sure i understand what the saying but there is no middle of the road

My dad as meso yet as treatment is suspended as too unwell doctors are saying its lung nodule under observation to justify lack of action.

My issue is misrepresentation and no middle ground.

But all is not lost as few asbestos solicatiors are saying numbers of asbestos deaths are grosly under estimated.

I know my dad very ill but its like doctors are not even going to try stop it spreading Its you have treatment OR nothing.

[JanetteR57 in reply to Hidden]

Sounds poor although know that for solitary nodules, the guidelines are followed according to the national thoracic society as part of the national optimum lung cancer pathway. Have you asked for a second opinion on your dad, from another Trust?

good luck for you and your dad in pursuing this.