Mesothelioma Summit 

by Laurie Kazan-Allen

 

 

(Report updated 22/3/06 to include final draft of the Mesothelioma Charter discussed below.)

A Mesothelioma Summit held in London on March 9, 2005 attracted a capacity audience of asbestos victims, family members, trade unionists, medical personnel, journalists and public health campaigners to consider what steps can be taken to focus national attention on the needs of thousands of UK citizens who have been disadvantaged and marginalized by asbestos-related illnesses. This initiative was organized by the British Lung Foundation (BLF) in collaboration with the June Hancock Mesothelioma Research Fund, the Chris Knighton Mesothelioma Research Fund and other groups and individuals active on this issue.
 

 Dame Helena Shovelton

Dame Helena Shovelton, Chief Executive of the BLF, expressed the view of many delegates that that there is a real need to push mesothelioma up the national political agenda. To this end, she proposed that:

  • a Mesothelioma Action Group be constituted to work towards a national Mesothelioma Action Day in February 2006;

  • a Mesothelioma Charter be composed which lays out the human rights of mesothelioma patients and their families.

Speaking about this “failed group of patients,” Liz Darlison discussed the steps being taken by Mesothelioma UK to educate and communicate with a broad spectrum of stakeholders. Forums at which she has participated include those organized by lung cancer nurse specialists, researchers, asbestos victims, charities, civil servants and solicitors; a free phone help-line provides vital support to victims and their relatives as well as nursing staff.

Dr. Helen Clayson, a specialist in palliative care, described the findings of a research project comparing the experiences and treatment of 83 mesothelioma patients in Barrow-in-Furness, Leeds and Doncaster. The use of quotes from interviewees added a personal dimension to the data and findings presented:

  • asbestos exposure was identified in 78 patients; in 71 it had been industrial;

  • the median interval between first exposure and onset of disease was 46 years;

  • 12 (15%) of the patients had pleural plaques;

  • median survival from presentation was 11 months;

  • mean time from symptom onset to hospital consultation was 3 months (the range was from the same day to 2 years);

  • 22 patients (26%) were admitted as emergency cases on their first hospital visits;

  • 75 patients (90%) required hospital admissions during their last year of life due to pleural effusions.

A recurrent theme was the difficulty of accessing government benefits and obtaining compensation. Professor Anthony Newman Taylor, Chairman of the Industrial Injuries Advisory Council, a scientific advisory group to the Department for Work and Pensions (DWP), confirmed that due to the underclaiming of Industrial Injuries Disablement Benefits (IIDB) by mesothelioma victims, a comprehensive review of mesothelioma and other asbestos-related diseases had been conducted. The report which is now awaiting the Minister's attention confirmed that:

  • there is a lack of awareness of the IIDB scheme;

  • patients are often too ill to claim;

  • a belief that the DWP requires medical assessment and extensive corroborative evidence deters claims;

  • sufferers are self-employed or non-occupationally exposed and therefore barred from IIDB.

Adrian Budgen, of Irwin Mitchell Solicitors, explained some of the complexities of claiming benefits such as Industrial Injures Disablement, Constant Attendance Allowance and Exceptionally Severe Disablement and the process of obtaining civil compensation from negligent employers. Responding to a question about the high cost of treatment with Pemetrexed (Alimta), a palliative chemotherapy drug, Mr. Budgen suggested including treatment costs in mesothelioma awards.

Another recurrent theme was the lack of government funding for medical research and treatment with new drugs. Dr. Jeremy Steele said that 60% of patients experienced improvement in their symptoms after treatment with drugs such as Alimta and Cisplatin; unfortunately, six cycles of these drugs cost £10,000. According to the Greater Manchester Asbestos Victims' Support Group, Primary Care Trusts in Greater Manchester are refusing to approve the necessary expenditures:

“Treatment of mesothelioma has to date cost the NHS very little; until recently patients were simply sent home to die. Now that palliative chemotherapy treatment is available it is imperative for medical and ethical reasons, and justified on grounds of cost, that it be provided NOW.”

In the UK, funds for research into mesothelioma biology and treatment protocols are urgently needed.
 

 Chris Knighton

The penultimate session of the day was a presentation by Chris Knighton, whose husband Mick died of mesothelioma in 2001. Photographs of Mick in his naval uniform showed a fit and robust man, referred to by Chris as “her rock.” The story told of Mick's symptoms, diagnosis, medical treatment and deterioration was the most hard-hitting of the day. Chris said:

“It happened so suddenly. When Mick was diagnosed he was told he had just months left and there way no treatment, no cure. He was just left.”

Determined to ensure that others do not suffer as Mick did, Chris and her family set up the Mick Knighton Mesothelioma Research Fund; their original goal to raise £100,000 for research has been surpassed.
 

 Facilitator of Group B Laurie Kazan-Allen

To facilitate discussion about the proposed Mesothelioma Charter, delegates were offered the opportunity to join one of five break-out groups. Opinions expressed in these sessions included:

  • there is a need for an agreed standard of care for mesothelioma; the availability of and access to treatment is patchy and slow: it can take 6 months for a mesothelioma patient to get a referral; a sense of nihilism regarding mesothelioma prevails amongst many general practitioners; there are few centres of excellence for treatment of mesothelioma, CT scans, surgery and radical radiotherapy;

  • treatment of mesothelioma requires coordinated treatment plans implemented by specialist multi-disciplinary teams; access pathways for support, benefits and compensation should be built into the process;

  • there was disagreement over the benefits of screening at-risk groups such as construction workers;

  • the current lack funding for UK research is unjustifiable

  • the difficulties faced by the self-employed, women and mesothelioma patients who experienced non-occupational exposure need to be remedied;

  • enforcement of asbestos legislation by the HSE and local authorities is compromised by the decreasing number of HSE inspectors and lack of funding;

  • hazardous asbestos exposure is still common in the construction industry;

  • employers who expose workers to asbestos should be punished with prison sentences;

  • the level of civil damages is “atrociously small;” mesothelioma victims who wish to continue at work should be given as much support as they need to do so;

  • government determination to tackle the national mesothelioma epidemic is essential;

  • campaigning for mesothelioma victims in the UK should be linked to global action; a global asbestos ban is essential.

There was consensus on the need for coordinated action and it was agreed that the Mesothelioma Charter, with some revisions, should be adopted.

_________________________________________________

Mesothelioma Charter
 

We, the undersigned, believe that Mesothelioma patients and their families have a right to:

  1. a speedy and accurate diagnosis, supported by a Multi Disciplinary Team discussion

  2. good quality information from a variety of sources available in different media and languages

  3. support of a suitably qualified nurse and other Multi Disciplinary Team members throughout their illness

  4. be considered for the best possible treatments available with the support and input of a Multi Disciplinary Team

  5. have up-to-date advice on benefits and help in applying for them, and receive prompt payment of benefits

  6. have legal advice and guidance from a firm of solicitors experienced in mesothelioma claims

  7. guidance on end of life decisions and care at home

  8. provision of a consistent nationwide service from coroners using a clear and open process with a maximum case length of three months.

And call upon the Government to:

  1. have mesothelioma made a national priority by the Cancer Tsar

  2. fund good quality research, alongside other national bodies, on mesothelioma with a view to improving diagnosis, treatment and outcomes for patients

  3. support the production of clinical Guidelines on the best practice of diagnosis and management of mesothelioma

  4. ensure the Health and Safety Executive vigorously enforce existing regulations on asbestos.

And call upon all employers to:

  1. prevent future exposure to asbestos by providing a safe working environment with all necessary equipment to protect employees

  2. work with unions and individuals to ensure enforcement of current regulations to safeguard all employees

  3. identify all asbestos in their properties and organise its safe removal where practical or necessary when work is being carried out.

Mesothelioma is a malignant lung disease which results mainly from exposure to asbestos. Someone dies every five hours from Mesothelioma in the UK.

_______

March 23, 2005

 

 

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